} } [1 A The Breast Cancer Digest A Guide to Medical Care, Emotional Support, Educational Programs, and Resources U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE Public Health Service National Institutes of Health \ National Cancer Institute. Bethesda, Maryland 20205 DHEW Publication No. (NIH) 79-1691 The Breast Cancer Digest was produced by the Office of Cancer Communications National Cancer Institute Bethesda, Maryland 20205 March 1979 ii Contents FOREWORD PREFACE ACKNOWLEDGEMENTS RATES, RISKS, AND DEVELOPMENT OF BREAST CANCER © ss ea 4 a a ss ss a se sss sees es es a es a ss 8 a ss ee esse esses Se es 4 ss ss as se sae eee INCIDENCE, SURVIVAL, AND MORTALITY Incidence Survival Mortality RISKS Misconceptions Age Previous Breast Cancer Genetics Diet Reproductive History Hormone Activity Radiation VIUSEE 2 scvusvvnssnsinnnssnmmansas High Risk Groups ................. THE DEVELOPMENT OF BREAST CANCER The Cell Cell Division ................... How Cancer Develops Breast Cancer The Breast The Lymphatic System BREAST CANCER TESTS AND TREATMENTS DETECTION Palpation Mammography Other Detection Methods DIAGNOSIS ........... i... Mammography as a Diagnostic Tool . Needle Biopsy Surgical Biopsy Determining the Extent of Disease Estrogen-receptor Assay Tumor Classification DE © es 4 es se ss se tess ee sees DI I I © a se es se sees see eee eee I EE © eee ee es sees eee Se ee ee esse ee eee ii TREATMENT ..................... Halsted Radical Mastectomy Extended Radical Mastectomy Modified Radical Mastectomy Simple (Total) Mastectomy ....... Simple Mastectomy Followed by Radiation Partial Mastectomy Followed by Radiation ..::cewsssesnsns Local Wide Excision (Tylectomy) Followed by Radiation ......... Subcutaneous Mastectomy Comparison and Comment — Surgical Treatments Radiation Therapy Chemotherapy ................. Endocrine Manipulation Immunotherapy REHABILITATION Complications from Surgery Prostheses Side Effects of Radiation Therapy Diet, Nutrition, and Skin Care During and After Radiation Therapy and Chemotherapy Side Effects of Endocrine Therapy Medical Follow-up BREAST RECONSTRUCTION Scheduling Candidates Implant Methods Flap Methods Areola-Nipple Reconstruction RECURRENT, METASTATIC, AND ADVANCED BREAST CANCER Recurrence Metastatic Disease Advanced (or Terminal) Disease . .. THE FINANCIAL IMPACT OF BREAST CANCER “eee ee “eee. © 6 se es ts ee cess “se ee ee “es ee ee eee “ee ss ee ee eee SC es es se es se ses ee Se es see ease sees eee et et ss es ee esse sees © es ss ss a eae eee 4 es ss es ee eee eee DEERE © tes ee ee ee sees eee ee se es ee es eee Se 4 a es ss es es assess eae Insurance Financial Assistance Employment THE IMPACT OF BREAST CANCER ON THE INFORMATION AND EDUCATION PUBLIC, PATIENTS, AND HEALTH PROFES— PROGRAMS .................... 95 SIONALS ..... 53 Public Knowledge and Attitudes 95 GENERAL ATTITUDES ........... 55 Mass Media Coverage ........... 96 Fear of Cancer and Dying ........ 55 Public Information Program Fear of Breast Loss ............. 56 Planning .................. 98 Anger, Guilt, and Denial ......... 58 Public and Patient Education ..... 98 DETECTION — ATTITUDES AND General Education Programs PRACTICES ..................... 59 (Before Detection) ........... 99 Avoidance of Breast Self- Detection Programs ............ 102 examination .....sssscicienna 59 First Medical Evaluation Programs 103 Lack of Knowledge and Confidence . 59 Biopsy /Possible Mastectomy Fear, Denial, and Fatalism ........ 59 Programs .................. 103 Delay in Seeking Treatment ...... 60 In-Hospital Programs After COPING WITH DIAGNOSIS .......... 62 Surgery .................... 104 The One-step Procedure ......... 62 Rehabilitation Programs After The Two-step Procedure ......... 62 Hospital Discharge ........... 104 Informing the Patient ........... 63 Adjuvant Treatment Programs .... 105 Helping the Patient Cope ......... 65 Reconstruction Programs ....... 106 COPING WITH TREATMENT ......... 66 Recurrence, Metastasis, and Hospitalization ................ 66 Advanced Illness Programs .... 106 Communication ................ 66 Professional Education Programs .. 107 Adjusting to Mastectomy ........ 67 RESOURCES ..................... 109 Denial, Fear, and Anxiety ........ 67 Support Services .............. 109 Anger... 68 Consulting the Physician ........ 110 Concept of Body Image .......... 68 The American Cancer Society 110 Grieving and Depression ......... 69 Cancer Care, Inc. and the National Dependence and Need for Support . 69 Cancer Foundation ........... 113 Rehabilitation Groups ........... 70 Telephone Information Services 113 Living with Chemotherapy and Detection Programs ............ 116 Radiation Therapy ............ 70 Cancer Centers ............... 118 EMOTIONAL AND COSMETIC ASPECTS Research — Clinical Cooperative OF BREAST RECONSTRUCTION ... 73 Oncology Groups ............ 123 Presurgical Counseling ........... 73 Hospices .................... 123 Anticipated Results ............. 75 Financial Aid ................. 123 Nipple Banking ................ 75 Legal Assistance .............. 124 Advantages and Disadvantages . . . .. 75 Professional, Government, and Lay COPING WITH RECURRENCE, META- Organizations with an Interest in STATIS, AND ADVANCED ILLNESS . 76 Breast Cancer . ine 124 Diagnosis . ........oorin. 76 Educational Materials .......... 126 Treatment . ................... 76 APPENDIX ........................ 127 Lifestyle Changes .............. 7 Appendix A — Breast Cancer Advanced (or Terminal) Illness .... 77 Survival Trends .............. 129 THE FAMILY COPES WITH BREAST Appendix B — Benign Breast Masses 131 CANCER ........................ 80 Appendix C — Breast Family Relationships ............ 80 Self-examination ............ 132 The Partner Copes with Breast Appendix D — Classification Cancer .................... 82 System of Breast Carcinoma 134 Children Cope with Breast Cancer .. 84 Appendix E — Chemotherapeutic THE HEALTH PROFESSIONAL COPES Drugs and Their Side Effects .. 137 WITHCANCER .................. 817 Appendix F — Glossary ......... 138 The Physician Copes ............ 87 REFERENCES/BIBLIOGRAPHY AND The Nurse COpes ............... 88 INDEX ........................... x 143 The Team Apmonshite 89 REFERENCES/BIBLIOGRAPHY ....... 145 INDEX 159 BREAST CANCER PROGRAMS AND RESOURCES .................... .. 93 iv Foreword Hl reast cancer is among the most dreaded of diseases. Not only is it the major cause of cancer death for women in this country, but it occurs frequently among women in their prime years, long before a disease of such severity is ex- pected. Despite the continuing impact of this dis- ease, progress against breast cancer is slowly but surely being made. A critical element in the fight against breast cancer is education of the health professional and, equally important, education of the public, breast cancer patients, and their families. Such ef- forts directed toward breast cancer patients and their families and the public at large require spe- cial care if they are to be as informative as they should be without arousing undue anxiety. Merely to create fear, or worse — denial of breast cancer symptoms — would be a disservice to all concerned. It is with the information and education func- tion in mind that The Breast Cancer Digest was produced — to attempt to gather into a single vol- ume the information and resources needed to plan, develop, and implement appropriate educational programs for the general public and breast cancer patients. While we believe its uses will be broader than that, it is for these purposes that this Digest was produced. We commend its use to profession- als and all others who are responsible for these important goals. Arthur C. Upton, M.D., Director National Cancer Institute National Cancer Program eae aaa ate a Smee mh emo cL Preface \Wihin the last decade a heightened public awareness of breast cancer has become evi- dent. The sheer number of new breast cancer cases, about 100,000 each year, has been in part responsible, but the well-publicized mastectomies of several prominent women also have contributed to making breast cancer a subject of intense pub- lic interest. Understandably, the public is inter- ested in learning about breast cancer. Progress is being made in early detection, diagnosis, treat- ment, rehabilitation, and in helping women and their families cope with the disease and its treat- ments. This progress, and how people can contri- bute to it, is the subject of The Breast Cancer Digest. The Digest was written as an objective and comprehensive overview of breast cancer for health professionals, especially health program planners and communicators. The book is not vii meant to suggest to those in the medical profes- sion how to treat breast cancer, but rather to provide them with an overview of all aspects of the disease and its effects, and how public and patient education programs may help achieve further progress against the disease. In addition, it is hoped the Digest will alert health professionals to some of the psychosocial problems breast cancer patients may experience and the relevant studies which may put such problems into perspective. In order to facilitate its use as a reference book, the Digest is divided into chapters dealing with the medical and emotional components of breast cancer detection, diagnosis, treatment, re- habilitation, and reconstruction. The Digest con- tains chapters on information and education programs and a listing of state resources. The index will assist occasional users. Acknowledgements he Breast Cancer Digest was compiled as a comprehensive and objective review of all aspects of breast cancer. Although the Digest does not represent or advocate the opinions of any individuals or other institutions, many profes- sionals with expertise in various areas of breast cancer and related subjects reviewed the manu- script. For their invaluable assistance in the re- view process, the Office of Cancer Communica- tions would like to thank: Lauren V. Ackermann, M.D. State University of New York at Stonybrook Adria Laboratories David L. Ahmann, M.D. Mayo Comprehensive Cancer Center Roy Ashikari, M.D. Memorial Sloan-Kettering Cancer Center The Association of Community Cancer Centers Irene Buckley, M.S.W. Cancer Care, Inc. George R. Blumenschein, M.D. University of Texas, M.D. Anderson Hospital and Tumor Institute George Crile, Jr., M.D. Cleveland Clinic Thomas D. Cronin, M.D. Baylor College of Medicine F. J. Cummings, M.D. Roger Williams General Hospital and Brown University Sona Euster, M.S.S.A. Memorial Sloan-Kettering Cancer Center Frank Field Science Editor, WNBC-TV Bernard Fisher, M.D. University of Pittsburgh Albert F. Fleury, M.D. Linda Freeman B’nai B’rith Women Mark C. Gebhardt, M.D. National Surgical Adjuvant Breast Project Joyce Hausdorff, R.N., Ed.D. Brooklyn Breast Cancer Demonstration Network Jimmie Holland, M.D. Memorial Sloan-Kettering Cancer Center and Montefiore Hospital Cindy Hunstiger, R.N. St. Marys Hospital Walter James American Cancer Society G. Timothy Johnson, M.D. Harvard University J. Gale Katterhagen, M.D. Allenmore Medical Center Knights of Columbus Rose Kushner Breast Cancer Advisory Center Peter G. Laarman American Federation of Teachers Patricia D. Lindsay University of Texas, M.D. Anderson Hospital and Tumor Institute Kathleen Lipiec, M.S.W. Michigan Cancer Foundation Lisa Begg Marino, R.N., M.S. University of Pittsburgh William Markel, M.D. American Cancer Society Peter McKinney, M.D. Northwestern University Medical School Muriel Pappert American Telephone and Telegraph Peter F. Petrucci, M.D. Leonard R. Prosnitz, M.D. Yale University School of Medicine Shirley Robson WDVM-TV Guy F. Robbins, M.D. Wendy S. Schain, Ed.D. Fran Scheinberg B’nai B’rith Women Rose Pierro Simmons, B.S., L.V.N. American Cancer Society Reuven K. Snyderman, M.D. College of Medicine and Dentistry of New Jersey-Rutgers Medical Society Phillip Strax, M.D. Guttman Institute Mila Tecala, A.C.S.W. St. Francis Institute Carol J. Thomas, R.N. Intermountain Health Care, Inc. Deborah Van Brunt Bureau of Radiological Health, Food and Drug Administration Avery D. Weisman, M.D. Massachusetts General Hospital In addition, the Office of Cancer Communica- tions would like to extend its appreciation to the following staff members of the National Cancer Institute who were instrumental in the Digest review: Ben E. Acton Louise A. Brinton, M.P.H. Lawrence Burke Ernest V. deMoss, M.D., M.P.H. Richard Costlow, M.D. Joseph F. Fraumeni, Jr., M.D. Vincent T. DeVita, Jr., M.D. Diane J. Fink, M.D. James E. Hamner, III, D.D.S., M.S,, Ph.D. Harry Handelsman, D.O. Shepard A. Insel, Ed.D. Brian J. Lewis, M.D. Bayard H. Morrison, M.D. William Pomerance, M.D. Gregory T. O’Conor, M.D. Alan S. Rabson, M.D. Marvin A. Schneiderman, Ph.D. Mary E. Sears, M.D. Saul A. Schepartz, M.D. Arthur C. Upton, M.D. John L. Young, Jr., Dr. P.H. Rates, Risks, and Development of Breast Cancer Incidence, Survival, and Mortality ost of the elements of progress against breast cancer described in this Digest have not been in use long enough to be reflected in the survival and mortality figures discussed in this chapter. Within the next decade, however, the benefits of breast cancer detection, treatment, and research will begin to be seen in extended survival and in reduced mortality of breast cancer patients. INCIDENCE According to the Third National Cancer Survey of cancer incidence (1969-71), breast cancer com- prises 27 percent of all cancers in women and is the leading cancer site in white and black fe- males.!®* Data gathered from 1973 to 1977 revealed it occurs each year in about 85 white women out of every 100,000 and in about 70 black women per 100,000.'°2 Breast cancer incidence rates for other racial and ethnic groups living in the United States had not been published at the time this Digest was compiled. However, among Asian women living in San Francisco between 1969 and 1977, breast cancer affected 38 Japanese and 47 Chinese per 100,000 per year.*®’ In 1978, breast cancer will have been diagnosed in about 105,200 American women. At the pres- ent rate, 1 out of every 14 women (about 7 percent) will develop breast cancer sometime in her lifetime. Although breast cancer primarily affects wo- men, it occasionally strikes men, accounting for 0.2 percent of all male cancers. It occurs more often in black men than in white men, affecting 10 black men in every million and 7 white men in every million. "8 SURVIVAL Once having developed breast cancer, black women have not done as well as white women. The specific reasons for this are unclear, although stage of diagnosis is later for black women than for white women generally. From 1960 to 1973, fewer black women (33 percent) than white wo- men (48 percent) had localized breast cancer at the time of diagnosis.!® However, figures from 1970 to 1973 indicate the differential may be lessening; the 5-year survival rate for localized disease was the same for women of both races under age 45.'% Among whites, breast cancer tends to be more fatal in men than in women: 53 percent of white men survive 5 years compared with 65 percent of white women. In part, this may be because many people think that breast cancer is exclu- sively a female disease. When men discover symp- toms of breast cancer, they may be more likely to ignore them. For white patients with localized breast cancer, 66 percent of the men survive 5 years compared with 85 percent of the women. !® Survival figures for black males are not avail- able because too few cases exist to allow good estimates to be made. For all white breast cancer patients (female and male) from 1960 to 1973, the median sur- vival from time of diagnosis was 6 years and 7 months, and for blacks, 3 years and 8 months. The extent to which breast cancer has spread is commonly referred to as the stage of disease. The stage of a breast cancer upon diag- nosis strongly influences survival. Three general terms describe the extent of disease: localized (cancerous tissue confined to its primary site in the breast); regional (evidence of cancer in the lymph nodes near the breast); and distant (spread to other areas of the body). Charts listing the relative survival rates for black and white women at various disease stages from 1950 to 1973 are listed in Appendix A. (Relative survival removes from comparison deaths of patients due to causes other than breast cancer.) 4 184 MORTALITY According to 1975 statistics, cancer ranks sec- ond to heart disease as the leading killer of American women.?%® Breast cancer kills more women aged 40 to 44 than any other disease, and it is the largest single cause of cancer deaths among women. In 1978, approximately 34,000 American women were expected to die of breast cancer.!! An analysis of all death certificates in the United States registered in the National Vital Statistics Registration System in 1975 indicated that breast cancer caused 23 deaths per 100,000 white women and 21 deaths per 100,000 black women. Since 1950, this age-adjusted death rate has increased 2 percent for white women and 12 percent for all others.’ A study based on deaths in the United States between 1950-1969 indicated that per 100,000 women, breast cancer each year killed 25 whites, 23 blacks, 11 American indians, 10 Chinese, and 6 Japanese.'% Risks he specific cause or causes of breast cancer are not known, and it is unlikely that any single factor triggers the disease. Breast cancer ap- pears to be a disease that depends on an interrela- tionship among a number of factors, the first three of which are the most important: age, pre- vious history of breast cancer, genetics (hereditary predisposition or mutations), diet, reproductive history, hormonal balance, chemicals, drugs, and radiation. This chapter contains an explanation of these risk factors, along with their relative importance. MISCONCEPTIONS First of all, it is important to know what does not cause breast cancer. For instance, a bump or a blow to the breast will not cause it, nor will fond- ling or caressing. And, the disease is not contagious. AGE The longer a woman lives, the more likely she is to develop breast cancer. Incidence increases rapidly as a woman enters her forties, levels off between the ages of 45 and 55, and then continues to rise at a more gradual rate, leaving post-menopausal women at higher risk.?%° PREVIOUS BREAST CANCER Breast cancer has a multicentric nature; that is, it has a tendency to recur in the same breast or in the opposite breast. Therefore, women who have had one breast cancer are at increased risk of de- veloping another. The extent to which they are at risk depends on the stage of their disease when it first was treated and whether the cancer is inva- sive (having the tendency to spread to surround- ing tissues). In one study of 904 breasts removed for cancer, 13.4 percent were found to have microscopic foci of multicentric cancer. This 13.4 percent is considered to be a conservative esti- mate of the frequency of multicentricity. Of those multicentric cancers, only 4.1 percent were invasive. However, when microscopic foci of multicentric cancer are present, there is no way to predict if they will spread.®? Breast cancer also has a tendency to develop in both breasts. Various studies have indicated that 10 to 25 percent of women with breast cancer in one breast also have it in the other.? Controversy exists as to whether benign breast disease increases a woman’s chances of develop- ing breast cancer. Although only certain subtypes of benign breast disease appear to be involved, benign cystic disease is the most likely breast cancer precursor. It has been estimated that a woman with cystic breasts is at fourfold greater risk to breast cancer than a woman without cystic breast disease.!?? (See Appendix B, Benign Breast Masses.) GENETICS Familial factors contribute to the development of breast cancer. Women whose mothers or sisters have had breast cancer are twice as likely to de- velop it, and there is growing evidence that wo- men whose fathers’ sisters or maternal or paternal grandmothers had the disease are also at above average risk. Jewish women who are descendants of European Jews are also at a somewhat greater risk of developing breast cancer.!8’ Researchers are conducting genetic and chro- mosomal studies to identify a hereditary link that would prove a predisposition or susceptibility to breast cancer, but thus far no definitive data prove such a link. Some “hereditary” breast cancers may actually result from a family’s expo- sure to common environmental factors. DIET The United States and Northern Europe have a breast cancer incidence rate five to six times high- er than that of most Asian and African countries reporting data. Some researchers believe the dif- ferences in incidence rates may be related at least in part to diet, especially to the consumption of animal fat and protein.'6° 23% The incidence of breast cancer in the United States increases with socioeconomic status, as the affluent often have a diet rich in cholesterol and protein. Because of their close relationship to nu- trition, weight and height have been suspected to be related to the development of breast cancer.!”’ The low incidence of breast cancer among Jap- anese women may be partially attributable to their low animal-fat, fish diets. Immigrants from low-risk cancer countries, however, do not main- tain that status in their new countries. Breast cancer incidence in Japanese women who have migrated to the United States is a good example; Japanese women living in Hawaii have incidence rates between those of their homeland and those of Caucasian Americans.!'? Incidence in first generation Japanese women living in San Fran- cisco increased to almost three times that of Jap- anese women living in Japan.23’ REPRODUCTIVE HISTORY A woman’s reproductive history can be another risk factor. To some extent, certain patterns of menstrual activity appear to influence a woman's chances of developing breast cancer. Women with a long menstrual history characterized by early menarche and late menopause are at higher than average risk. Women are less susceptible to breast cancer if they have had a natural early menopause or if they have had their ovaries removed and thus experienced an artificially early menopause.!®° The age at which a woman completes her first full-term pregnancy affects her risks of developing breast cancer. Women who have their first child before age 18 have about one-third the risk of those whose first child is born after age 35. Preg- nancy before age 30 appears to offer some pro- tection; women who have their first child after age 30 are at somewhat higher risk than those who never have given birth to a child.!° HORMONE ACTIVITY Because these risk factors are related to a wo- man’s reproductive and menstrual history, ovarian activity and circulating levels of the female hor- mone estrogen have become suspect. Hormone activity also is suspected to affect development of cysts in the breast. This may be why some wom- en with a history of benign cystic disease may have higher risks of developing breast cancer.'8! It is known that estrogens affect some cells’ division (the main characteristic of all cancers), and hormones have been shown to increase the risk of cancer of the endometrium (uterine lining). Therefore, use of exogenous hormones, such as oral contraceptives and those used for estrogen re- placement therapy, may be related to the develop- ment of breast cancer. In the 1940’ and 1950’, approximately 2 mil- lion women took the estrogen diethylstilbestrol (DES) to avert miscarriage. Including these women and their offspring, approximately 4 to 6 million persons have been exposed. Recently, a study of mothers involved in one randomized clinical trial conducted in 1950-1952 was reviewed. The trial compared mothers who had taken DES during pregnancy with a similar group of women who took a placebo. This review indicated that more breast and gynecological cancers had occurred in DES-exposed mothers than among those given a placebo, although the difference was not statistically significant. Another study of women with lower doses showed no excess of breast cancer over that among exposed women of the same age in the same community. A government task force stated that “a relationship between DES exposure during pregnancy and risk of cancer is unproved. However, existing studies are sufficient cause for serious concern over the drug’s carcinogenic potential in this population.” 8 The task force recommended that research continue on the effects of DES, that physicians inform patients exposed to DES during preg- nancy of their exposure and the need for medical follow-up for themselves and their offspring. Women who believe they have been exposed to DES should alert their physicians to the fact. The task force also recommends that exposed women ® have an annual physical examination and medical history ® have an annual pelvic examination and bi- manual palpation of the uterus ® examine their breasts monthly and report anything abnormal to their physician e follow the current NCI guidelines for mam- mography (See Detection. A possible inter- action between DES and radiation has been shown in experimental studies but no con- clusions have been reached.) ® have the appropriate diagnostic tests if symp- toms appear ® avoid exposure to other estrogens if possible. This includes oral contraceptives, estrogens as a “morning-after pill,” and estrogens used for replacement during or after menopause and for lactation suppression.!86 The Food and Drug Administration now re- quires that drug companies provide information directly to the patient about the use of estrogen replacement drugs and their association to breast cancer and currently suggests the following infor- mation be used as part of a package insert for these drugs: Estrogens can cause development of other tumors in animals, such as tumors of the breast, cervix, vagina, or liver, when given for a long time. At present there is no good evidence that women using estrogen in the menopause have an increased risk of such tumors, but there is no way yet to be sure they do not and one study raises the possibility that use of estrogens in the menopause may increase the risk of breast cancer many years later. This is a further reason to use estrogens only when clearly needed. While you are taking estrogens, it is important that you go to your doctor at least once a year for a physical examination. Also, if members of your family have had breast cancer or if you have breast nodules or abnormal mam- mograms (breast x-rays), your doctor may wish to carry out more frequent examinations of your breasts.’ The role of oral contraceptives in contributing to the development of breast cancer still has not been determined, although they are suspect. In some studies, however, the use of birth control pills appeared to protect women against develop- ment of benign breast disease.?”! In laboratory tests of oral contraceptives breast tumors have been produced in mice, but only suggestive evidence exists confirming the Pill as a cause of breast cancer in humans. A recent study of women who had taken the Pill over a period of time showed that Pill use over a period of 2 to 4 years is associated with an increase in breast cancer incidence. In addition, the study associated an enhanced risk to breast cancer when the Pill was taken in the presence of benign breast disease.'*® The controversy about whether the Pill causes breast cancer is likely to continue for some years since researchers will not be able to fully evaluate its effects until the data on long-time Pill users are in. The Food and Drug Administration, how- ever, now requires that information must be con- tained in package inserts of oral contraceptives, warning consumers of the suspected link to breast cancer.%® RADIATION Doses of ionizing (high energy) radiation which damage tissue may also cause breast cancer to de- velop. Japanese women exposed to radiation in Hiroshima later developed an increased number of breast neoplasms (new or abnormal growths). Fluoroscopes that emit radiation used in evalu- ating the progress of tuberculosis have been known to cause breast cancer. Mammograms (breast X-rays) also may increase a woman's chances of developing breast cancer.!”® (Mammo- graphy is discussed in the Detection and Diag- nosis chapters.) VIRUSES No direct evidence exists to indicate breast cancer in humans is caused or transmitted by a virus. However, the mouse mammary tumor virus iso- lated in laboratory tests does cause breast cancer to develop in certain strains of mice. Virus parti- cles similar to the mouse mammary tumor virus also were discovered in human breast milk. These particles may be more prevalent in women who have a family history of breast cancer. The parti- cles also have been frequently detected in Parsi women, a small ethnic group in India in which breast cancer incidence may be unusually high.!8 In addition, researchers are studying substances which may prove to be a breast cancer virus. HIGH RISK GROUPS The existing lists of factors that are suspected to contribute to the development of breast cancer have been compiled from studies conducted on breast cancer patients. However, the extent to which these factors individually or in combination contribute to the development of breast cancer in a healthy population is not known and may be considerably different. Because the list of breast cancer risk factors is lengthy, an overwhelming majority of women fit into at least one risk cate- gory. This often is misleading because the degree to which each factor contributes to the develop- ment of breast cancer has not been assessed fully. Having any or all risk factors does not mean a woman will develop breast cancer. However, women who fit into any of the three major risk categories should be aware of their status, ex- amine their breasts regularly, and, depending on their status, make use of other breast cancer de- tection devices. (See Detection.) Many elements may contribute to a woman'’s chances of developing breast cancer. Due to the lack of definitive data, the risk factors discussed in this chapter cannot be listed in order of pri- ority, but women in the three groups below are considered to be at the greatest risk , ® advanced age | ® previous personal history of breast cancer ® history of breast cancer in a mother or a sister Women in the following groups may be at in- creased risk, but not enough is now known to say how much risk is involved: ® history of breast cancer in a maternal or paternal grandmother, father’s sister, or mother’s sister : ® history of cystic disease ® birth of first baby after the age of 30 nulliparity (never borne children) early menarche and late menopause excessive exposure to ionizing radiation history of cancer of the endometrium, ovary, or colon large body size (particularly related to obes- ity and/or high intake of animal fats) estrogen replacement therapy The Development of Breast Cancer o understand how a cancer develops it is first important to understand how a normal cell works. THE CELL Cells are composed of microscopic bits of gelatin- like material called protoplasm, which is com- posed mainly of nucleic acids, proteins, carbo- hydrates, lipids, and inorganic salts. Each cell con- tains a large structure called the nucleus. The pro- toplasm surrounding the nucleus is called cyto- plasm and that composing the nucleus is called nucleoplasm. The wall of the cell is a permeable membrane that selectively controls the entrance and exit of materials found in the surrounding tissue fluid. Scattered throughout the cell are vari- ous microscopic particles, called organelles, which contribute to the functioning of an organism. These organelles extract what they need from the nutrients sieved through the cell membrane. The two functions of all cells and their sub- cellular structures are to produce energy (to sup- port the function of their particular organism) and to reproduce themselves (when tissues require repair or replacement or when their cyclical func- tions change). CELL DIVISION Cells reproduce at different rates of speed. For ex- ample, normal blood and skin cells divide and subdivide rapidly; normal liver cells reproduce slowly.?!S The process of cell division is called mitosis. Within the nucleus of every cell is a certain number of chromosomes, which are like tightly- coiled threads. These chromosomes, composed of complex molecules called deoxyribonucleic acid (DNA), are somewhat comparable to computer tapes and contain bits of information that deter- mine the structure and function of the parent cells. Pieces of DNA, spirally linked to form a “double helix,” are the carriers of hereditary traits.2”® Every organism — animal or plant — has a num- ber of chromosomes specific to its species. Hu- mans normally have 46 chromosomes, 23 from each parent. At some specific regulated time in every cell’s life, the chromosomes arrange them- selves in strands and begin to duplicate in a proc- ess called twinning. After a set of “daughter” chromosomes has been formed, the strands sep- arate and begin to move toward opposite sides of the cell. When this is complete, the membrane of the cell forms a cleft in the center that deepens until the single parent cell separates to form two individual daughter cells. By the time cleavage (the last stage of mitosis) occurs, the now sep- arated chromosomes are enclosed in their own nuclei. All cells operate according to an individual biological clock. After resting for whatever length of time this clock has decreed, the daughter cells will begin mitosis. Such a generation (or cycle of reproduction) is known as a passage. The lifetime of any healthy cell is divided into four distinct periods. There is an M (mitosis) period, the time when the actual separation or cleavage into two daughter cells occurs. Once the two daughter cells have been formed, they go into a resting period called G-O and G-1 (gap), which can last for minutes or months, depending on the cell and its function. The G-1 period ends when the S (synthesis) period begins. During the S period, the DNA molecules start to twin, and this stage lasts until the chromosomes have sep- arated. When the threads of DNA have reached opposite sides of the cell and have become en- closed in their nuclei, the G-2 period begins. This is the interval that extends from the end of DNA duplication until the beginning of the D period, when the cleavage into two daughters becomes apparent. Once this is completed, the life cycle will begin again.?!s During the G-O period, the cell contributes to its organism’s functioning and rests, but does not reproduce. It then moves into the G-1 stage in preparation for DNA synthesis and subsequent mitosis. The length of time a cell remains in the G-1 period varies. For example, blood cells may be in G-1 for only 20 minutes, because they are constantly being destroyed and need to be re- placed. On the other hand, adult bone cells may have G-1 periods that last for years; their repro- ductive periods may not be awakened and trig- gered into action until an injury occurs.4’ The other stages of cells’ life cycles, however, are constant. The G-2 period lasts 2 hours in every cell in the body. The M period takes 40 minutes in every cell, and the S period lasts 7 hours.?!s HOW CANCER DEVELOPS These details of a cell’s life cycle help explain what cancer is and how it begins. When a cell be- comes cancerous it is usually during the S period of the cycle, when the chromosomes are dupli- cating. Mutations at this time can damage the DNA molecule that controls reproduction. DNA mutations usually do not result in cancerous daughter cells; countless other minor and major medical problems are begun by cellular mutations.??° A cell’s tendency to over-reproduce as a result of a mutation can, on the other hand, trigger the beginning of a cancer. A single cell seemingly loses control over its own reproductive apparatus, and as a result, a neoplasm, or a group of abnor- mal cells, is born. Neoplasms are not always cancer. In many cases these new growths are be- nign and usually are harmless. Several theories have attempted to explain the genetic nature of cancer. One theory suggests a genetic cancer may result from an oncogene being passed on from a parent. (A gene is the basic unit of heredity located in the chromosomes. An on- cogene is a potentially cancer-causing gene.) Or the cancer may be caused by a mutation that oc- curred sometime during the organism’s develop- ment. No one knows what causes mutations. Cancer also can be triggered by environmental agents such as ultraviolet rays from the sun, ioniz- ing radiation, viruses, or certain chemicals. A number of natural and man-made chemicals have been implicated as cancer-causing agents in both animals and humans.?°® Whatever the triggering mechanism, the process during which a normal cell changes to a cancer cell is known as transformation. 10 BREAST CANCER Cancers usually are named for the body organ or tissue in which the cancer originated. For example, if a tumor from a previous breast cancer is found in a distant organ, the cells of this secondary cancer would be breast cancer cells. Pathologists often can recognize whether a new tumor arose in the site where it was detected or is breast cancer that has metastasized. Cancers are further classified by the specific tissue from which they arise. For example, most breast cancers occur in the glandular tissue of the breast, and are called adenocarcinomas. (‘‘Adeno”’ refers to gland-like tissue; carcinomas arise from epithelial tissue.) There are also rare mammary sarcomas which originate in the connective tissue of the breast. In addition to its organ and tissue sites, breast cancer is identified by the anatomical part of the breast where the cancer began. Three-fourths of all mammary adenocarcinomas start within the milk ducts and are known as intraductal cancers. These adenocarcinomas may be invasive or non- invasive. There are also lobular adenocarcinomas, which begin in one of the lobes, and inflamma- tory adenocarcinomas, which start in the lym- phatic system of the breast. Paget’s disease is an adenocarcinoma that affects the nipple. Pathologists subdivide breast cancer even fur- ther. Breast cancers are distinguished by a differ- ence in the type of cancer cell composing the tumor, but often a single tumor can be made up of several different types of cells. Tubular, medul- lary, comedo, mucinous or colloid, papillary, and scirrhous carcinomas are all invasive cancers, but each has a different rate of growth and metastatic potential. In situ (confined) carcinomas are, by definition, noninvasive, but they can become invasive and thus be able to metastasize. There is no way to predict which will remain stationary and which will spread. From the day a girl reaches puberty and begins to menstruate, her breasts regularly prepare them- selves, month after month, for a possible preg- nancy. Because breasts of menstruating women undergo these cyclical changes, they are of greater density than the breasts of postmenopausal wom- en. Female breasts are especially susceptible to problems because these continued cyclical changes are accompanied by cellular changes. Any physio- * logical routine that is frequently being upset by in- terruptions — no matter how normal or natural — is subject to an increased possibility of problems. To be palpable by a trained person, a breast lump must be about 1 centimeter, or about the size of a pea. (It has been estimated that a woman who examines her breasts each month can detect a 1.6 centimeter tumor.)!?° Roughly, this equals 1 billion cells or 30 reproduction passages. The fastest-growing breast cancer cell known doubles about every 23 days; the slowest doubles about every 209 days.* It has been estimated that the average doubling time of a breast cancer is 4 months.!?° This means that once a tumor can be felt, it may have been in the breast for at least 2 years. During this time, cancer cells may have been shed into the blood stream or the lymphatic system and may have circulated throughout the body. Thus, even before any symptoms of breast cancer are noticeable, clusters of breast cancer cells already may have colonized in the regional lymph nodes or in other distant organs. Thus, a palpable mass in the armpit or elsewhere could mean a tumor is in the breast, even though it can- not be felt. THE BREAST An understanding of the anatomy of the breast, chest muscles, and the lymphatic system helps explain how breast cancer spreads and why it is treated as it is. Normal breasts are composed of many types of body tissue. The components of the mammary gland are enclosed by a membrane called the fascia. The superficial fascia is a membrane direct- ly under the skin and over the breast tissue; the deep fascia separates the breast tissue from the underlying muscles of the chest wall. Two muscles lie underneath the breast tissue: the pectoralis major and the pectoralis minor. These muscles cover the ribs and aid in controlling arm move- ments. The Cooper’s ligaments are attached to the skin and keep the breasts in position. Protective layers of fat line each breast. Arranged within each breast like spokes on a wheel are approximately 20 lobes. These lobes are subdivided into lobules and end in tiny milk-pro- ducing bulbs called acini. The lobes, lobules, and acini are connected to the nipple by a complex network of ducts that enlarge as they enter the nipple. These enlargements are called the lactifer- ous sinuses. The external openings of the sinuses are the numerous pin-sized holes that secrete milk when it is needed.!%* The nipple contains tiny glands to lubricate the 11 area during breast feeding. It is surrounding by the areola, a pink or brownish circle of skin. Both the nipple and the areola have nerve endings and blood vessels that extend from larger connections within the breast itself. THE LYMPHATIC SYSTEM The lymphatic system removes wastes excreted from all body tissues and carries fluid that con- tains the many phagocytes (cell-killers) and other lymphocytes (white blood cells) of the body’s im- mune system. The lymph nodes of the axilla (armpit) and the internal mammary chain (along the sternum) are the breasts’ first outposts in this immunological defense system. Lymph nodes manufacture lymphocytes, which trap and destroy many of the invading cells that reach them. Often, however, the lymph nodes are overcome by the invaders and either become infected by some dis- ease, or become cancerous, if the invader is a cancer cell. The presence of cancer cells in lymph nodes results in the subsequent diagnosis of “‘posi- tive nodes” in some breast cancer patients after surgery. For many years some physicians felt the axil- lary and internal mammary nodes were able to trap all cancer cells coming from the breast, thus preventing them from escaping into the body. Now it is known that the nodes are often ineffec- tive in stopping the spread of all cancer cells. Moreover, cancer cells can metastasize to other organs by traveling in the blood vessels, which have no nodal barriers to slow or stop the cells. Each breast contains a network of lymphatic vessels that drains either into the lymph nodes of the axilla or into the internal mammary nodes. Tumors in the outer half of the breast (between the nipple and armpit) usually drain into the axil- lary lymph nodes of that breast, and the extent to which cancer has spread can be estimated when these nodes are removed and examined. More than three malignant axillary nodes indicate the disease may be systemically disseminated. The internal mammary chain is the drainage point for tumors located in the inner half of the breast, and the condition of these nodes cannot be ascertained without removing a portion of the rib cage. When the internal mammary chain is invaded by cancer, a strong possibility exists that the disease already has spread to other organs of the body. -_-.«—Pectoralis Minor nem Two muscles, the pectoralis major and the pectoralis minor, lie underneath the breast tissue, cover the ribs, and aid arm movement. The Cooper's ligaments, which hold the breasts in position, are attached to the breast tissue and skin. is Approximately 20 lobes are arranged within each breast; the lobes are subdivided into lobules and end in milk-producing bulbs called acini. A complex network of ducts connects the lobes, lobules, and acini to the nipple. a Internal Mammary Lymph Nodes BIE The lymphatic system removes wastes excreted from all body tissues and carries the fluid of the immune system throughout the body. Each breast contains a network of lymphatic vessels that drains either into the lymph nodes of the armpit or into the internal mammary lymph nodes. Breast Cancer Tests and Treatments m= err - Detection ntil breast cancer can be prevented, the great- U: hope for its control is early detection, diagnosis, and treatment. A number of methods can help detect breast cancer. While only a com- bination of physical examination and mammo- graphy in women 50 years of age and older has proven benefit in lowering mortality rates, other detection methods discussed below are widely used and believed by many physicians to have benefit. PALPATION Palpation is a technique using the fingers to ex- amine the breasts physically. Palpation, either by a physician, the woman herself, or another trained person, is one of the simpler and more effective methods of breast cancer detection. About 90 percent of breast cancer symptoms are discovered by women themselves, either by accident or when examining their breasts. In- cluded in this 90 percent are tumors discovered by husbands or lovers.!! A breast examination by a physician should be part of regular physical checkups. In 1973, the American Cancer Society commissioned a Gallup Organization survey entitled “Women’s Attitudes Regarding Breast Cancer.” Of the women sur- veyed, 77 percent were aware of breast self- examination (BSE), but only 23 percent said they had a physician who examined their breasts at every check-up; 76 percent reported that a phy- sician had examined their breasts as part of a med- ical examination sometime in the last 5 years. Monthly breast self-examination can help dis- cover either a breast abnormality or a breast cancer while it is still small. While BSE has been promoted for a number of years, some health care professionals question whether regular practice of BSE results in longer survival among those women who develop breast cancer. !8° Several recent studies begin to answer this ques- tion. One study reported that breast cancer 17 patients who practiced BSE were diagnosed at a significantly earlier stage of disease than women who did not practice BSE.>* Another study observed that BSE has an impact on breast can- cer patient survival. Patients who practiced BSE monthly had a 15 percent increased survival rate compared to those who had never examined themselves.®® Although other studies also con- clude that BSE is of value,'®® no definitive evidence exists showing that the practice of BSE reduces breast cancer mortality. How a woman learns about BSE affects how frequently she practices it. Seventy-seven percent of the women surveyed in the 1973 Gallup study were aware of BSE, but only 18 percent prac- ticed BSE monthly. Thirty-one percent of the women who were aware of BSE had received per- sonal BSE instruction (by a physician, a physi- cian’s nurse, or other person). Among those who received personal instruction, 92 percent had practiced it, and 33 percent of the practicers said they did so monthly. Eight out of ten of those women who received personal instruction were taught by a physician.®® Learning the correct method of BSE is the re- sponsibility of a woman and her physician. If her physician does not initiate or encourage instruc- tion in BSE, the woman should request it. (For further information on breast self-examination, including teaching instructions and illustrations, see Appendix C.) If the self-examination reveals any changes or abnormalities — lump or thickening, a discharge from or inversion of the nipple, scaly skin around the nipple, dimpling or puckering of breast skin, swelling or discoloration, alteration in size or shape — medical attention should be sought at once. Although none of these conditions means that a woman has breast cancer, further examina- tion is imperative. Breast self-examination is one of the best ways to discover a sign of breast cancer while it is still small. BSE should be practiced once a month and at the same time each month. MAMMOGRAPHY Mammography, the process of X-raying the breast, can detect occult tumors before they become pal- pable. All mammographic examinations are per- formed with X-ray machines, which give equally good views of the breast tissue as either a negative image on film or as a positive image on paper. The terms film/screen and xeroradiographic systems also refer to a mammographic examination. (Xero- radiography is a mammographic technique de- veloped by the Xerox Corporation. Mammo- graphic images produced by this method are called “xeroradiograms” or “xerograms.”’) Approximately 2 million American women have mammograms each year.”® A mammographic ex- amination should be performed by a radiologist or trained radiologic technician. In a typical mam- mogram, two exposures at right angles are made of each breast: a caudal exposure, in which the X-ray beam is directed vertically through the breast, with the woman seated, and a medial- lateral exposure with the woman supine, in which the X-ray beam is directed horizontally through the breast. The entire breast is visible in the result- ing mammograms which are analyzed by the radiologist. The radiologist sends the report to the referring physician, who probably will recommend a biopsy, if cancer is suspected. Mammography as a Screening Device. In 1963, the Health Insurance Plan of Greater New York (HIP), in cooperation with the National Cancer Institute, began a controlled clinical trial to deter- mine if yearly screening of asymptomatic women using both mammography and physical examina- tion would reduce mortality from breast cancer. The study and control groups each consisted of two stratified random samples of 31,000 women. All women were aged 40 to 64, and were offered four annual screening examinations. After 7 years, early results of the study suggested that screening was effective in detecting breast cancer in its early stages.!®’ Analysis of the HIP data indicates that when combined with a physical examination mammo- graphy is beneficial in reducing deaths from breast cancer in women over 50 years of age. In the group of women over 50, breast cancer mortality was reduced over 40 percent; below age 50, there was no difference in mortality rates be- tween the study and control groups.!®” It is not understood why the benefit was evident only in women over age 50. According to the HIP study analysis, the com- 19 bination of physical examination plus yearly mammography was effective in lowering mortality rates in older, symptom-free women later found to have cancer. The mortality rate among women aged 50 to 59 who developed breast cancer was 46 percent lower in the study group (those who underwent annual physicals and mammography) than in the control group, and 36 percent lower among women over 60.187 Review of the HIP study showed no evidence that such routine screening of symptom-free women under age 50 produced any reduced mor- tality. The mortality rates in the study and control groups were virtually identical among women aged 40 to 49 who developed cancer.!8’ Based on early HIP study reports, the National Cancer Institute and the American Cancer Society jointly sponsored 27 Breast Cancer Detection Demonstration Projects (BCDDPs) to study fur- ther the acceptance and efficacy of yearly breast cancer screening. Started in 1973, the BCDDPs were designed to examine a total of 280,000 women between the ages of 35 and 74 by physical examination, mammography, and thermography (photographs of heat patterns in the breast) for 5 consecutive years, with 5 years of follow-up. In 1975, concern arose over the possible cancer hazard posed by repeated radiation exposure from yearly mammography. The National Cancer Insti- tute initiated a re-evaluation of the benefits of mammography versus its risks. The effects of radiation exposure from mam- mography are difficult to determine. The ideal maximum radiation dosage per examination per breast is less than 1 rad (radiation absorbed dose). A complete mammographic examination of one breast (two exposures), resulting in a total absorption of one rad of radiation, has been esti- mated to increase the average woman’s presumed lifetime risk of developing breast cancer (esti- mated to be about 7 in 100 or 7 percent) by no more than 1 percent (that is, from 7 percent to no more than 7.07 percent). This means if 1 rad per breast were given per mammographic exami- nation, it would take approximately 14 examina- tions to increase a woman’s chances of developing breast cancer to 8 out of 100. Lower doses of radiation produce less risk. It should be noted that the carcinogenic effects of radiation on the breasts may not become evident for 10 to 20 years after exposure. Because of concerns over possible increased risk and lack of demonstrated benefit, the BCDDPs Mammography, a technique for X-raying the breast, is the most reliable mechanical method for detect- ing a breast cancer before it can be felt. It is also used to help diagnose breast cancer in women with symptoms. were urged to stop mammographic screening of asymptomatic women aged 40 to 49 unless they had a personal history of breast cancer, a mother or sister who had breast cancer, or unless they were aged 35 to 39 and had had breast cancer be- fore. In addition, the National Cancer Institute authorized a working group to study the findings available from the screening program. The working group’s report was presented to a panel of scien- tists, clinicians and laymen involved in the medical, ethical, and legal aspects of breast cancer pathology, detection, treatment, and epidemiology. As a result of the working group’s deliberations, the panel recommended that the BCDDPs be con- tinued as a demonstration program and based on the group’s findings the National Cancer Institute implemented the following guidelines for breast cancer screening: * e Monthly breast self-examination (BSE) and the report of any abnormal findings to their physicians e Annual palpation of the breasts by qualified medical personnel eo No mammography under age 35 e Between 35 to 39, annual mammography only if the woman has a personal history of breast cancer e Between 40 to 49, annual mammography examination only if a woman has a history of breast cancer in immediate relatives or a personal history of breast cancer ® Over age 50, annual mammographic exami- nation may be considered 1°! 186 Interim guidelines for use of mammography were expected to be issued in late 1978 by the Bureau of Radiological Health, Food and Drug Administration, a federal agency which creates standards for medical use of X-radiation. Because the dosage of radiation produced by mammographic equipment and techniques em- ployed by facilities vary, women are encouraged to ask questions about the amount of radiation to which they are being exposed before undergoing mammography. Breast size and density also have a bearing on the dosage of radiation necessary to produce a good mammographic image. In addition to providing low-dose radiation exposure, mammo- graphic facilities should be striving to use the least * The value of mammography used for diagnosis of symp- tomatic women of any age was not in question. (See Diagnosis.) possible dose needed for a good image. Research is under way to develop mammo- graphic equipment and techniques which provide clear, readable images while exposing women to even lower doses of radiation. Good quality mam- mograms now can be obtained with doses of .2 to .3 rads with new film-screen methods. Newer and more sophisticated mammographic techniques, some of which deliver as little as .05 of a rad to each breast per complete examination, also are being investigated, but have not been used long enough to determine whether they are as success- ful in identifying early lesions as standard mam- mography. In view of the potential of consider- ably reduced dosage, the risk of low-dose radiation in mammographic screening needs to be re-evaluated. Mammography Quality Assurance. BENT (Breast Ex- posure: Nationwide Trends) is a voluntary mam- mographic quality assurance program conducted by the Bureau of Radiological Health (which is part of the Food and Drug Administration, U.S. Department of Health, Education, and Welfare) and approximately 40 state radiation control agencies. BENT personnel test the amount of radiation emitted by mammographic equipment in use in their area, compare the image with images obtained from similar equipment, and ad- vise radiologists if exposures appear to be very high or unusually low. A variety of measurements involving the X-ray machine, imaging, and image processing also are performed and recommenda- tions are made to improve the various aspects of the mammographic technique. State health de- partments can provide additional information about their state’s BENT program. OTHER DETECTION METHODS Before any detection technique is made available for widespread use it must be proven in a clinical trial. Thermography, ultrasound, graphic stress telethermometry, and tumor markers are new techniques now being tested which in the future may prove to be valuable breast cancer detection methods. Thermography. The body naturally emits radiant energy in the form of heat; the thermographic photograph is a pictorial representation of heat patterns on the surface of the breast. A woman having a thermogram must allow her skin temper- ature to cool by disrobing to the waist and sitting in a room 20° C (68° F) with her arms above her head. (Because tumors occur in the axilla [arm- pit], the arms must be raised to allow that skin to 21 cool.) After 10 minutes in this position her breasts are photographed by an infrared camera which re- cords skin surface temperatures. Rapidly-growing tumors have an increased blood supply giving increased venous drainage and a higher surface temperature, which results in in- frared radiation from the skin. (Whether small tumors or pre-invasive lesions do the same has not yet been determined.) In thermographic photo- graphs, abnormalities in the breast are repres- sented by “hot” spots or areas of increased blood distribution. Black and white film shows a gray- scale map of radiation; warm spots can be made to show up white, cool spots black, or vice versa. When color film is used, warm spots are repre- sented by a particular color. The accuracy of thermography varies widely, as it is highly qualitative and subjective. Refinement in machinery and standardization in taking, quan- tifying, and classifying thermograms must be achieved before thermography can be determined to be useful as a dependable quantitative and ob- jective screening device. It has been reported that a woman with an abnormal thermogram has a 15- fold increased risk of developing breast cancer.'4 A biopsy would not be indicated on the basis of an abnormal thermogram alone. The greatest advantage of thermography over mammography is that there is no patient exposure to ionizing radiation. Because mammograms géh- erally are not recommended for asymptomatic women under 40, women with a family history of breast cancer may have periodic thermograms as part of a regular breast examination. While thermo- graphy cannot be used to diagnose breast cancer, it may reveal abnormalities that warrant further tests and may serve as a baseline for comparison to future thermograms. Ultrasound. Ultrasound is a painless, noninvasive method of detecting breast abnormalities by pro- jecting high-frequency sound waves into the breast. The pattern of echoes from these sound waves is converted by computer into an image of the interior of the breast. Investigators are study- ing the attenuation and speed of these sound waves as they pass through the breast. Clinical studies also are being conducted to determine the 22 safety and accuracy of ultrasound. Preliminary re- sults in patients with larger tumors indicate a false negative rate (incorrect indication that no abnor- mality is present) of 7.6 percent and a false posi- tive rate (incorrect indication of an abnormality) of 18.5 percent. Before ultrasound can be used routinely as a breast cancer detection device, more accurate equipment must be developed.?? Graphic Stress Telethermometry. Graphic stress tele- thermometry (GST) is a method being studied which can be used in conjunction with a physical examination and mammography as a breast cancer risk indicator. GST is based on the same principle as thermography — that any warm spot in the breast may indicate the presence of cancer. When tested by GST, a woman, disrobed to the waist, lies in a room while her skin temperature cools to the room’s temperature (20-22°C, 68-72°F). A pencil-like probe is then passed over every area of each breast. She then sits up and places her hands in ice water for 15 seconds. The probe is passed over the breast again to detect changes in temper- ature. The results of the temperature tests are fed into a computer, which analyzes the changes and produces a risk score from 1 to 99. Scores 40 and under indicate low risk, 41 to 70 indicate above- average risk, and over 70 indicate high risk. In 173 biopsies, 65 cancers were found in cases clas- sified at high risk by GST, 20 in the above-average risk category, and two in the low risk group. Thus far the study results indicate that women with GST scores in the above-average risk category should be followed closely. GST is not intended to be used alone, but in conjunction with a physi- cal examination and mammography. Because GST appears to act as a risk indicator, GST scores may also help in better determining when a mammo- gram may be needed.?%¢ Tumor-markers. Currently, scientists are studying the blood to find a tumor-marker, an antigen in the blood, that would be capable of indicating breast cancer is present. As yet, no tumor-marker has been isolated that is sufficiently accurate to indicate the presepce or absence of breast cancer, but the search eventually may reveal a tumor- marker that will help detect non-palpable breast cancer. hysicians use other in-office tests to supple- ment an examination by palpation. A physi- cian may transilluminate the patient’s breast to determine if a lump is a cyst by pressing a flash- light-like instrument against the breast. Cysts will appear clear or semi-clear while tumors appear opaque.'4’ If a nipple discharge is evident, the physician may arrange for a cytologic examination. Such examinations have a high rate of false negatives (18 percent) and false positives (2.1 percent) as well. 14 These two tests alone cannot provide a definite diagnosis of breast cancer, but they do help indi- cate what the next diagnostic test should be. (See Appendix B for a description of benign breast masses.) MAMMOGRAPHY AS A DIAGNOSTIC TOOL Mammography is a valuable diagnostic tool for women of any age who have symptoms of breast cancer. A mammogram may be recommended e for women who have a palpable lump in the breast or under the arm to help determine whether a biopsy should be performed or the lump aspirated or observed. for women who have noticed changes or ab- normalities in the breast skin (including dimpling, discoloration, or puckering), in the nipples (including scaling, discharge, or sud- den inversion), or in the size or shape of the breast. !! NEEDLE BIOPSY A needle biopsy is used to help determine if a breast mass is a cyst or tumor. It can be per- formed on an outpatient basis and does not re- quire a general anesthetic. There are two types of needle biopsies: fine needle, which extracts fluid, and wide needle, which extracts a tissue specimen from the tumor. In a fine needle biopsy, a hypodermic syringe is used to remove fluid from a breast mass. Anes- * 23 thetic usually is not needed. Samples of the tissue fluid are spread on a slide and examined micro- scopically by a cytologist. If the growth is a non- cancerous cyst, it may be drained, surgically re- moved, or observed. If the cystic fluid contains cancerous cells, further treatment will be necessary. A wide needle biopsy removes a small sample of tissue from the breast. The procedure usually requires only a local anesthetic. Unfortunately, the extracted tissue specimen may be inadequate or the suspicious mass may be missed. Thus, even if needle biopsy of a solid tumor shows no evi- dence of cancer, the possibility of cancer cannot be excluded. Because a surgical biopsy may be necessary to confirm results of a needle biopsy, many physicians feel needle biopsy is useful only as a supplemental technique or in very special circumstances. Needle biopsies may be preferred over surgical biopsies when it is not feasible for the patient to undergo surgery because the recuperation period inhibits other treatment. Because no hospitaliza- tion is needed, needle biopsies are less expensive than surgical biopsies. SURGICAL BIOPSY Excisional biopsy (surgical removal of the sus- picious tissue for evaluation) is the primary diag- nostic technique that can provide a definitive diagnosis of cancer in a solid breast mass. A surgi- cal biopsy can be performed under a local anes- thetic in the doctor’s office, or under general anesthesia in the hospital on either an inpatient or an outpatient basis. The excised tissue specimen can be examined in two ways — either quickly by a frozen section while the patient is still anesthetized or by a per- manent section. The latter involves a 48-hour process in which the tissue is fixed in formalin, imbedded in paraffin blocks, then sliced, stained, and studied microscopically. Diagnosing cancer by a frozen section permits the biopsy and definitive surgery to be combined in one operation (one- step or one-stage procedure), whereas a permanent section provides the opportunity for a more defi- nitive analysis and the time for the patient and her surgeon to consider alternative treatment methods (two-step or two-stage procedure). Because occult tumors in an apparently normal breast are occasionally found when cancer has been diagnosed in the other breast (mirror-image cancers), the opposite breast may be biopsied at the same time to determine if a second cancer is present. DETERMINING THE EXTENT OF DISEASE If cancer is found, X-rays, blood tests, body scans, and urinalyses are used to determine the extent of the cancer beyond the breast. These tests (referred to as staging) are performed so that appropriate methods of treatment can be determined. When the cancer has spread beyond the axillary lymph nodes to other organs of the body, removal of the breast may not be the best primary treat- ment. In such cases, most physicians prefer non- surgical treatment and believe that the time needed for the patient to recuperate from surgery only delays other forms of treatment. Staging can follow a positive biopsy if biopsy and treatment are undertaken as separate proced- ures. If a one-step procedure (biopsy followed immediately, if necessary, by mastectomy) is used, staging usually is performed preoperatively, if cancer is strongly suspected. However, if a one- step procedure is planned and the existence of cancer is confirmed during biopsy, staging can be performed after mastectomy. Proponents of the one-step procedure contend that if staging is per- formed prior to a one-step procedure and the tumor is not cancer, the patient will have been exposed to needless radiation and will have incur- red the costs of the tests. However, those favoring the two-step procedure argue that in addition to the benefits of knowing the extent of disease prior to treatment, a woman undergoing biopsy as an outpatient will not have incurred the expense of unnecessary hospitalization. Modern mammography is detecting very small cancers within the female breast. These cancers are often difficult for the pathologist to interpret and there are differences of opinion among path- ologists with expertise in breast cancer pathology on the exact classification of these cellular ab- normalities. In cases where a tumor detected by mammography is less than 1 centimeter in size, a two-step procedure is highly desirable. This pro- vides time to obtain another pathologist’s opinion to help determine whether the tumor is cancerous in equivocal cases. ESTROGEN-RECEPTOR ASSAY The estrogen-receptor assay is a test performed on tumor tissue to determine whether the cancer’s growth may be affected by the female hormone estrogen. If the cancer reappears after primary treatment, the results of the estrogen-receptor assay usually are used to determine if endocrine manipulation (changing the level of hormones in the body) is likely to be effective in controlling the cancer. Endocrine manipulation is possible by surgically removing the ovaries, adrenal glands, or the pituitary gland, or by administering large doses of hormones. Ovarian function also can be terminated by radiation treatment directed at the ovaries. Because fewer than half of all breast cancers respond to hormonal therapy, it is impor- tant to establish whether the cancer may respond to endocrine manipulation before such treatment is undertaken. About two-thirds of the patients whose tumors contain estrogen receptors (estrogen-receptor positive) respond to endocrine therapy. Research- ers have been seeking a biological marker that will identify patients with estrogen-dependent cancers who will not respond to endocrine manipulation. Results of studies indicate that an estrogen-de- pendent tumor may start out with both estrogen and progesterone receptors — one of which may be lost during the course of metastasis. Since a progesterone receptor appears to require the pres- ence of an estrogen responsive tumor, combined use of the estrogen-receptor and progesterone- receptor assays may help further select treatment for metastatic breast cancer patients. Both tests are relatively new procedures requir- ing trained personnel and special equipment which are not yet widely available. In many areas, the progesterone-receptor assay may be unavailable. However, a woman scheduled for biopsy should ask her physician for these tests to be performed. Then, if alerted by the physician before biopsy that an estrogen-receptor assay may be needed, the hospital pathologist will be able to make the necessary arrangements. TUMOR CLASSIFICATION Two aspects of breast cancer need to be consid- ered when choosing treatment: the characteristics of the cancer that influence its growth, and the extent to which the disease has spread. 24 A number of systems are used clinically to clas- doctors and researchers to compare and evaluate sify the extent of a breast cancer by describing rates of treatment and survival rates in patients its characteristics. Such classification provides a with similar disease characteristics. (See Appendix standard for describing the disease, aids in select- D.) ing primary and adjuvant therapy, and allows 25 Treatment he options for local surgical treatment of pri- mary breast cancer range from removal of the tumor only to the extended radical mastectomy which removes the breast, pectoral muscles, axil- lary and internal mammary lymph nodes, and a section of rib. Radiation therapy, chemotherapy, endocrine manipulation, and immunotherapy also are used in an attempt to destroy or control cancer cells which may remain in the operative area or which may have spread to other organs or systems. When cancer is advanced, situated in an inoperable area, or when the patient cannot or will not undergo surgery, these treatment methods also are used as alternatives to surgery. Controversy surrounds the procedures used to treat breast cancer. The medical efficacy, physical impact, risks, and benefits of various treatments are subjects of continuing study. Perhaps the greatest controversy is whether it is necessary to perform a Halsted radical mastectomy to treat any breast cancers. Proponents of less ex- tensive surgical techniques point out that, for cer- tain stages and types of breast cancer, there are few differences in survival rates and recurrence rates between the Halsted radical mastectomy and less extensive surgical procedures. >! Although many clinical trials have been con- ducted to compare and evaluate surgical proce- dures, many of the findings are considered incon- clusive because of problems in how the trials were conducted or analyzed. Retrospective studies are of questionable value in most cases because pa- tients were not matched by age and stage of dis- ease, sample sizes were limited, and supportive care has changed with time. Consequently, in 1957 the National Surgical Adjuvant Breast Project (NSABP) was organized by the National Cancer Institute to assess the value of various methods of breast cancer treat- ment. Since then, physicians in general hospitals, cancer centers, and medical schools have been 26 sharing information from various clinical trials. An orderly sequence of gathering and processing data from these clinical trials provides the objec- tive information necessary to evaluate the surgi- cal methods used to treat breast cancer.’* The Halsted radical mastectomy often is used as a basis for comparison to other surgical techniques because some surgeons claim it is the only method that has proven its effectiveness by producing relatively high survival rates and reduced recur- rence rates for more than 80 years. In addition to the controversy within the medi- cal profession, increasing numbers of breast cancer patients are resisting radical surgery. Although a skilled and sensitive cancer surgeon can minimize the physical and psychological side effects that accompany breast loss, mastectomy frequently re- sults in an aesthetically displeasing appearance, certain physical limitations, and major psychologi- cal adjustments. These considerations cannot be dismissed lightly, since a major goal of treatment is to return the patient to as normal a postopera- tive life as possible. However, most physicians argue that favorable cosmetic and psychological results must not have a higher priority than effec- tive cancer control. Ultimately, it is the patient’s decision whether to undergo treatment and the type of treatment to be used. The evolution and major characteristics of sur- gical techniques used to treat breast cancer are described on the following pages. HALSTED RADICAL MASTECTOMY This procedure removes the entire breast, skin, the pectoral muscles (both major and minor), the axil- lary lymph nodes, and fat. The physical results of a Halsted radical mastectomy are a flattened or sunken chest wall and the potential for developing lymphedema (swelling of the arm) and shoulder stiffness. A description of this kind of surgery was first published by William Stewart Halsted in 1894, and it soon became the most commonly used sur- gical procedure for treating breast cancer in the United States. For more than half a century the merits of the Halsted radical mastectomy were undisputed, and it was widely accepted as stand- ard treatment for breast cancer.” Halsted’s motivation for developing an effective surgical technique stemmed from his concern over the high rate of local breast cancer recurrence ob- served by other surgeons of his day. He achieved his goal, reducing local recurrence to 6 percent and metastasis to 16 percent in 50 patients. How- ever, there is no evidence that he actually en- hanced survival rates.” Halsted’s surgical procedure did not include the removal of internal mammary lymph nodes be- cause he did not understand the role of the lym- phatic system in the spread of cancer: he believed that “breast cancer in the broad sense is a local affectation.”’* It is now known that even if all cancerous axillary nodes are removed in a Halsted radical mastectomy, cancer cells may have already spread through the lymphatic system to other lymph nodes and to other organs and body systems. C. D. Haagensen studied breast cancer patients treated by Halsted radical mastectomies between 1935 and 1955 who had no clinically positive axillary nodes and whose levels of disease were essentially, but not exactly, comparable to clinical Stages I and II. (See Diagnosis and Appendix D for information on clinical staging.) Eighty-five per- cent of those in Stage I and 59 percent of Stage II patients were alive 5 years after radical mastectomies.!®® The number of positive axillary nodes signifi- cantly affects recurrence and survival rates. Of patients studied by the NSABP since 1957, breast cancer recurrence rates were high among those who demonstrated positive axillary nodes when their Halsted radical mastectomies were per- formed. Sixty-seven percent of patients with one to three positive nodes and 81 percent of those with four or more positive nodes had a cancer recurrence within 5 years. Sixty-two percent of NSABP patients in the same study who had one to three positive axillary nodes at the time of their Halsted radical mastec- tomies survived for 5 years after surgery. Of those who had four or more positive nodes, 30 percent survived for 5 years.” Although surgical techniques other than the Halsted radical mastectomy have not been studied in controlled trials as long as the Halsted, clinical 27 trials have been conducted to determine the long- term effectiveness of less extensive surgical pro- cedures used alone and in combination with other treatments. EXTENDED RADICAL MASTECTOMY The extended radical mastectomy involves exci- sion of all tissue removed in a Halsted radical mastectomy plus the internal mammary lymph nodes. Usually a section of the rib cage must be removed to reach these nodes. This procedure evolved from physicians’ concern about allowing potentially-cancerous internal lymph nodes to re- main in the body, and was favored by many sur- geons in the 1950’s and early 1960’s as a treat- ment for patients with tumors located in the area of the breast between the nipple and the sternum. Because special expertise is needed to perform the extended radical mastectomy, the average sur- geon using this technique under ordinary hospital conditions may be risking increased patient mor- tality both during and after surgery. Those who favor the procedure recognize this danger. They believe some risk is justified, however, because of the even higher incidence of cancer involvement in the internal mammary nodes from tumors lo- cated in the inner quadrant or middle of the breast. For example, a recent study reported that the internal mammary nodes were found to be cancerous in 28 percent of inner quadrant can- cers, 21 percent of centrally-located cancers, and 13 percent of outer quadrant cancers. In patients who exhibited no evident axillary node involve- ment, 7 percent had internal mammary node in- volvement. Of those with axillary node involve- ment, 29 percent also had involvement of this group of nodes.3” Physicians had hoped that the extended radical mastectomy would result in higher breast cancer survival rates, but clinical trials have not provided evidence of such benefits. A prominent breast cancer surgeon reported that 40 percent of pa- tients with both axillary and internal node involve- ment were clinically free of disease 5 years after extended radical mastectomies.?%S This figure is comparable to findings of the NSABP for similar patients who were treated with Halsted radical mastectomies: 38 percent were free of disease after 5 years.” It has been suggested that re- moval of the internal and axillary mammary nodes fails to control breast cancer because involvement of the internal mammary and axillary lymph nodes is a signal that the disease has metastasized and could be affected only by some type of sys- temic therapy.®? Five- and ten-year survival rates did not differ significantly between patients treated by the Halsted radical and extended radical mastectomies at the National Cancer Institute of Peru. The In- stitute reported that 60.9 percent of those treated by extended radical mastectomy and 58 percent of those treated by the Halsted radical mastec- tomy survived 5 years. At 10 years, 42 percent and 44 percent, respectively, survived.3” Analysis of one international cooperative study comparing the Halsted radical and extended radical mastec- tomies showed no significant difference in overall 5-year survival rates. However, analysis of a small subgroup of T1 and T2 tumors (less than 5 centimeters with possible fixation to muscle or fascia) located in the medial and inner quadrant of the breast with axillary involvement showed that the extended radical mastectomy improved surviv- al. Fifty-two percent of the patients treated by the Halsted radical mastectomy were alive after 5 years, while 71 percent treated by the extended radical mastectomy survived 5 years.'4? MODIFIED RADICAL MASTECTOMY The modified radical mastectomy involves removal of the breast, some fat, and most of the axillary lymph nodes, but the chest muscles are left intact. The modified radical is technically more difficult and more time consuming to perform than the Halsted radical because removing axillary lymph nodes is more difficult when the pectoral muscles are left intact.!!s This procedure usually results in a more cos- metically-pleasing appearance than the Halsted and extended radicals. Although removal of the breast produces the major disfigurement, the modified radical mastectomy eliminates the hollowness be- neath the clavicle, thus permitting women to wear clothes with lower necklines than more radical surgery would allow. The modified radical may reduce the woman’s chances of developing lymphedema because fewer lymph vessels are severed. In addition, because the chest muscles are preserved, the patient’s arm is stronger after a modified radical than after a Hal- sted radical mastectomy. The modified radical mastectomy was first re- ported in 1948 by two British surgeons who did not believe that breast cancer spread through the pectoral muscles.2%® Thus far, it appears their as- sumption was correct — that the chest muscles do not disseminate breast cancer. Some surgeons, however, believe that the modified radical should be performed only on patients with small, non- 28 invasive carcinomas in the outer half of the breast and with clinically-negative axillary nodes.??? Their concern is that large or deep-seated cancers invade the lining of the pectoral muscles (fascia) and sometimes the muscles themselves. Tumor involvement of the pectoral muscles, however, usually occurs only in the more advanced stages of breast cancer. Thus, when cancer is diagnosed in its early stages, it can be eliminated without re- moving these muscles.?% After 5 years in one study, the recurrence- free survival rates of the modified radical are com- parable to those of the Halsted radical.'®® Thus, the majority of surgeons now are performing the modified radical mastectomy. SIMPLE (TOTAL) MASTECTOMY In a simple (or total) mastectomy, only the breast is removed, leaving the axillary nodes and pectoral muscles intact. This avoids the sunken chest that results from the Halsted radical and extended rad- ical mastectomies and greatly reduces the possibil- ity of lymphedema because the axillary lymph nodes are not disturbed. In 1948, Dr. Robert McWhirter compared the survival rates of patients treated by simple mastec- tomy followed by radiation with those of patients treated by the Halsted radical mastectomy com- |, bined with postoperative radiation. McWhirter re- ported a 62.1 percent 5-year survival rate for those treated by simple mastectomy and radiation and a 50.1 percent 5-year survival rate for pa- tients treated with the Halsted radical mastectomy and radiation. He did not biopsy the nodes to de- termine if they were affected, because he believed that even the most radical surgery failed to elimi- nate all cancer in the operative area. He concluded that radiation therapy would destroy cancerous cells that remained in the operative area as well as those in the nodes.” Surgeons who perform the simple mastectomy today stage the disease clinically prior to surgery and dissect only the axillary lymph nodes closest to the breast. If cancer has spread to the nodes, either radiation, a modified radical, or a Halsted radical mastectomy is used. If there is no low axillary nodal involvement, a simple mastectomy is performed, and the axilla is observed closely after surgery. If cancer develops in the nodes, they are surgically removed.”* SIMPLE MASTECTOMY FOLLOWED BY RADIATION Data from a British study begun in 1967 suggest that simple and radical mastectomies may result in similar recurrence and survival rates. In both surgical procedures an axillary lymph node closest to the breast was removed for pathological evalua- tion and the nodal areas were observed. Radiation was given following surgery only if the nodes were involved. Thus far, no significant differences have been noted in recurrence and survival rates. The authors’ preliminary judgment is that conserva- tive surgery combined with additional therapy, depending on the nodal status, is a “rational de- velopment in the local management of the disease.”?%* A clinical trial begun in 1971 by the NSABP compares the Halsted radical mastectomy with the simple mastectomy plus radiotherapy in pa- tients with clinical evidence of axillary node metastases and compares the Halsted radical mastectomy, the simple mastectomy plus radio- therapy, and the simple mastectomy alone in patients with clinically negative axillae. The pa- tients who subsequently demonstrate axillary node metastases undergo delayed axillary dis- section. Preliminary results reported in November 1976 show no advantage in recurrence rates or survival for the patients who had undergone the Halsted radical mastectomy. Axillary dissection, either concurrent or delayed, and radiation appear equally effective in controlling nodal metastases.”® Although the recurrence and survival rates of these trials must stand the test of time, the early findings indicate that the Halsted radical mastec- tomy may have no special merit and further sub- stantiate the value of the modified radical mas- tectomy, the simple mastectomy only, or the simple mastectomy followed by radiation. PARTIAL MASTECTOMY FOLLOWED BY RADIATION The partial mastectomy is termed “partial” be- cause although the tumor and 2 to 3 centimeters of surrounding tissue are removed, some of the breast remains, along with half of the tissue, fascia, and skin. Although the breast is partially saved with this procedure, a wedge of tissue, fascia, and skin is removed and the breast may be markedly disfigured. If appropriate, the breast can be augmented later by plastic surgery, or the size of the other breast can be reduced to match the affected breast more closely. A major argument against performing surgical techniques that do not remove all breast tissue is that they do not take into account the multicen- tric nature of breast cancer, i.e., its tendency to appear in another part of the breast or to develop 29 in the opposite breast. To kill cancer cells remain- ing in the breast, radiation therapy may be given following surgery. And, to better stage the disease, many surgeons believe that partial mastectomy should be supplemented by the removal and ex- amination of at least a portion of the axillary nodes. In one study, 53 patients treated by partial mastectomy from 1957 through 1966 were com- pared with the same number of patients treated by total mastectomy during the same period. The re- sults indicated that at 5 years the survival rates of the patients treated by partial mastectomy were as high as those treated by total mastectomy.5? However, this was not a rigidly controlled clinical trial; such a trial is currently under way. Although partial mastectomy appears to result in higher local recurrence rates than does more extensive surgery, proponents of this procedure maintain that higher local recurrence rates have little effect on survival rates. They point out that such recurrences are treated by mastectomy or the removal of axillary nodes, after which the patient may remain well. Partial mastectomy is appealing to women both because it does not involve complete breast loss and it may offer survival rates comparable to those of more extensive operations. Knowledge of the availability of this procedure may reduce the numbers of women who delay seeking treatment because of fears that successful treatment requires complete breast loss. However, more data are needed to ascertain the efficacy of partial mastectomy. LOCAL WIDE EXCISION (TYLECTOMY) FOLLOWED BY RADIATION Local wide excision (also called tylectomy, lump- ectomy, wedge excision, and quadrant excision) removes only the tumor mass and a small amount of the surrounding breast tissue, leaving the muscles, skin, and nodes. Local excision is less traumatic and less disfiguring than mastectomy, but few surgeons perform this operation without following it with radiation therapy because they believe removal of the tumor may not eradicate all cancer from the breast. In Boston between July 1968 and December 1974, 150 patients with local carcinoma of the breast were treated by radiation or by radiation in combination with excision of the breast mass. Median follow-up time was 33 months for Stage I patients, 45 months for Stage II patients, and 41 months for those with Stage III breast cancer. All Radiation therapy may be used prior to surgery to shrink a large tumor to an operable size, after surgery, or by itself for palliation or when surgery is not recommended or desired. patients with Stage I breast cancer remained free of disease. Patients with Stage II disease had no recurrences, but 35 percent died of metastatic cancer (65 percent survival rate). Stage III patients did not fare well: 32.5 percent experienced a local recurrence and only 26 percent survived. Be- cause tumor size and nodal involvement appear to play a large part in the recurrence and survival rates of the patients studied, the authors of the study suggest that such procedures include the dissection of a few axillary lymph nodes to deter- mine if a regimen of chemotherapy is required to help eradicate the cancer from the body.!%’ Several other studies of patients having “early” breast cancer and negative axillary lymph nodes treated by local excision and postoperative ir- radiation show a 70 percent or better survival rate.!6 182 183 207 220 288 These results are equal to those of the Halsted radical mastectomy for pa- tients at a similar stage of disease. The success in treating Stage I and II cancers by local excision and radiation has caused many physicians to believe that, in properly selected cases, local excision of a small tumor with ade- quate margins of surrounding tissue may achieve results comparable with more extensive proce- dures. A clinical trial is now underway in which the area of the breast surrounding a small tumor is excised and a biopsy performed on a low axil- lary node. In a portion of the patients whose axillary biopsy is negative, no postoperative treat- ment is administered.? SUBCUTANEOUS MASTECTOMY In subcutaneous mastectomy, the internal breast tissue is removed, leaving the skin. The excised breast tissue is then carefully examined by a path- ologist, and if an invasive cancer is found, the breast and axillary lymph nodes are removed in a subsequent operation. Some time after the sub- cutaneous mastectomy, an implant is inserted in the chest cavity to restore the contour of the breast. Subcutaneous mastectomy and breast augmentation also can be performed as a one-step surgical procedure. Subcutaneous mastectomy has been used as a primary treatment for a lobular cancer in situ or other noninvasive cancers that are not located close to the nipple. The major objection to sub- cutaneous mastectomy performed to treat invasive cancer is that all breast tissue cannot be complete- ly removed from the nipple area. This procedure sometimes is recommended for some women considered at high risk to breast cancer. Women who suffer severe fibrocystic dis- ease of the breast (an inclusive term describing noncancerous cysts that appear in the glandular stroma, the ducts, sacs, or acini) also may be candidates for subcutaneous mastectomy. Fifty percent of adult women are affected to some de- gree by fibrocystic disease.’ Subcutaneous mastectomy has been used and may be considered in the following cases: eo multiple persistent breast nodules ® a biopsy that shows moderate to severe non- cancerous breast disease e a family history of breast cancer in a patient who has progressive breast nodularity ® nodularity or cystic disease in one breast when a cancer has been found in the other?® COMPARISON AND COMMENT — SURGICAL TREATMENTS Support and criticism of specific surgical methods continue both among members of the medical profession and between the medical profession and knowledgeable segments of the general public. The surgeon’s primary aims of treatment, in order of importance, are to preserve the life of the woman, to minimize the chances for recurrence, and to provide the best cosmetic results. Most surgeons feel the goal of disease control should not be com- promised.”” However, the treatment decision re- mains with the patient. There are two main concerns regarding the ef- Ticacy of any surgical method used to treat breast cancer. The first is the possibility that colonies of cancer cells may be left in the body after surgery. If there is no sure provision for eradicating these colonies by other means, many surgeons believe it is logical to remove the greatest amount of tissue surrounding the tumor. Second, a determination that one type of sur- gery clearly is preferable to another requires a clinical study yielding proof of lengthened sur- vival rates. Most clinical investigators think the data collected thus far do not support the use of one technique over another. Most radiotherapists believe the lack of significant differences among various types of mastectomy indicates that further surgical breast cancer trials are unnecessary. Indi- vidual studies have been criticized because the criteria used are not consistent with those of other studies, making valid comparisons difficult or impossible. The following evaluation criteria have been sug- gested for an objective comparison of procedures: 31 10-year rather than 5-year survival rates tumor location, size, and tissue type percentage of cases by stage, and complete description of components of each stage, in- cluding number of nodes involved variations in surgical technique percentage of local recurrences, including those in the chest wall, remaining breast tis- sue, and axilla functional results, including arm and shoulder mobility, and a uniform standard for significant arm edema (increase in fore- arm measurement of 3 centimeters or more compared with other side) cosmetic appearance a large enough number of cases for statis- tically significant evaluation absolute (gross) survival rates (It has been suggested that adjusted figures for deaths due to causes other than cancer or lack of follow- up should be included and explained, but not offered as cancer survival figures. )'4’ RADIATION THERAPY Radiation therapy is an effective form of primary treatment for many types of cancer, such as head and neck cancer or cancer of the uterus or cervix, where it is used alone without surgery. Many radiotherapists and other physicians now believe radiation is as effective as mastectomy in treating breast cancer when used alone or combined with local excision. (See Partial Mastectomy Followed by Radiation and Local Wide Excision [Tylecto- my] Followed by Radiation.) Others disagree. If administered just as a cancer cell is ready to reproduce, radiation will stop the cell from divid- ing and the cell eventually will die. Because cancer cells continue to grow at faster rates than normal cells, they are more susceptible to radiation. Radiation directed at the chest wall and to the axillary, internal mammary, and supraclavicular nodes may be combined with surgery. It may be used to shrink a large tumor to a size amenable to surgery, as a substitute for surgery when cancer has reached an advanced, inoperable stage, or when the patient cannot undergo surgery for medical reasons. In addition to external doses of radiation, implantation of a radiation source in the breast can supplement external radiation in destroying cancer cells. Radiation also is used to relieve bone pain caused by breast cancer that has metastasized to the skeletal system. In the past, it was believed that radiation was necessary to destroy all cancer cells that might have remained after mastectomy, even though the 32 axillary lymph nodes had been surgically excised. This is no longer routine practice. Most radiotherapists believe that the proper dosage of radiation, combined with local excision, is just as effective as mastectomy in eliminating breast cancer recurrence and improving survival. Many other physicians disagree. Mastectomy plus radiation was compared with mastectomy alone in a British study of patients treated between 1949 and 1955. The researchers found that 5-year survival rates were the same for patients treated with mastectomy plus radia- tion and patients treated with mastectomy alone.?%? Similar 5-year survival rates were re- ported in 1970 by an NSABP study which began in 1961.78 The British study found the rate of local recur- rence was lower in the group treated with radia- tion.2?2 The effectiveness of radiotherapy in pre- venting local recurrences was noted by the 1970 NSABP report; when radiation was administered immediately after surgery, the chance of local recurrence was decreased by 50 percent. In the group that received postoperative radiation, how- ever, there was a greater incidence of distant metastasis as first evidence of treatment failure. Five-year survival rates were almost identical in the two groups. Data from a carefully conducted study in Sweden to determine the value of preoperative and postoperative radiation as an adjunct to radi- cal surgery show no difference in crude 4-year survival rates, but the groups given radiation ther- apy had a much lower incidence of local recurrence.®? Currently, radiation has four specific applica- tions in breast cancer treatment ® as primary treatment for inflammatory breast cancer, for local control of inoperable breast cancer for patients who cannot under- go surgery for medical reasons or when can- cer is at an advanced stage, or for patients who refuse surgery ® as an adjunct to mastectomy or local excision ® to shrink a large tumor to an operable size ® as palliation to alleviate pain caused by dis- tant metastasis CHEMOTHERAPY Chemotherapy (treatment by drugs) can kill can- cerous cells shed into the blood stream and the lymph system by the original tumor, but it affects normal cells as well. Anticancer drugs are not used as a primary treatment for breast cancer; they are administered in conjunction with local surgery and/or radiotherapy (adjuvant chemotherapy) or in cases of recurrence or metastasis. Chemotherapy is administered orally or by in- jection, into a muscle or vein, weekly or monthly, and occasionally on a daily basis. The majority of chemotherapy regimens currently in use are com- prised of various combinations of drugs. No anticancer drug has been found that exclu- sively attacks cancer cells and leaves healthy cells unharmed. While no ideal drug exists, what is known about metabolic and growth differences between cancer cells and normal cells can be used to the healthy cells’ advantage. Almost every drug does its work during the cells’ duplicating period when the chromosomes are most vulnerable. Thus, nondividing cells are least likely to be destroyed by drugs, and normal cells are slightly less sus- ceptible than cancer cells to the drugs’ effects. Cell studies have shown that, as the size of the tumor mass increases, the number of actively- dividing cancer cells decreases. Therefore, small cancers are considered the best targets for chemo- therapy. (See The Development of Breast Cancer.) Because all cells are not in the same stage of growth at the same time, drug therapy regimens are given at different intervals to kill a maximum number of cancer cells. All anticancer drugs have potentially-dangerous side effects and must be ad- ministered carefully by medical professionals ex- perienced in their use. Four major types of drugs are used against breast cancer cells. e Alkylating agents include nitrogen mustards like L-phenylalanine mustard (L-PAM) or melphalan (Alkeran) and cyclophosphamide (Cytoxan), as well as other chemical groups. These agents work against cancer cells by in- hibiting cell growth in much the same way radiation acts. eo Antimetabolites act early in cell mitosis by interfering with enzymes that are critical for the synthesis of the RNA and DNA building blocks. This interference inhibits a cell’s nu- trition, thus “starving” the cell and killing it. 5-Fluorouracil (5-FU) and methotrexate are the antimetabolities commonly used to treat breast cancer. Antibiotics, primarily adriamycin (Doxoru- bicin) and actinomycin D, combat breast cancer by adhering to DNA and inhibiting DNA replication and transcription. Breast tumors are particularly responsive to adri- amycin, and this agent also has been widely and successfully used against other cancers 33 that previously have been unresponsive to drug therapy. Mitotic inhibitors are drugs that prevent cell division. The primary mitotic inhibitors are vinca alkaloids derived from strains of the periwinkle plant. By preventing mitosis, vinblastine sulfate (Velban) and vincristine sulfate (Oncovin) paralyze the tumor and cause it to shrink. Because of their toxic side effects and because they are not as effective in cell destruction as other agents, vinca alka- loids are not among the most frequently pre- scribed treatments for breast cancer. Gastrointestinal problems, including nausea, are common temporary side effects of many drugs used to fight breast cancer. Sometimes intravenous administration of certain drugs will cause a burn- ing sensation in the veins for several days. Because hair follicles grow rapidly, the hair is susceptible to the action of anticancer drugs. Although the hair may fall out, the loss is usually only temporary. Chemotherapy has some major drawbacks. Anticancer drugs have varying degrees of toxicity and carcinogenicity: alkylating agents have been found to induce leukemia in some patients who have taken them long term.?!” However, the side effects of these drugs are well known, they can be anticipated and, in most cases, controlled. Further- more, anticancer drugs may lose their cell-killing ability when the body builds up a resistance to them. Delicate timing is needed to strike a cell when it is dividing, and toxicity must be constant- ly monitored. Because of the therapeutic value of chemotherapy, specialists are combining different types of anticancer drugs and carefully timing their administration to achieve the best results with the fewest ill effects. The ultimate goal is to develop effective chemotherapeutic agents that have no serious side effects or complications. (See Appendix E, Chemotherapeutic Drugs and Their Side Effects.) Drug Effectiveness. The National Surgical Adjuvant Breast Project tested L-phenylalanine mustard (L- PAM) administered to one group of postsurgical breast cancer patients against a placebo given to an identical group. Preliminary results indicate that, in premenopausal women, L-PAM is effective in lengthening the time a woman remains free of disease following mastectomy. In postmenopausal patients, however, a similar effect has not been seen.”’ Clinical trials also are being undertaken to com- pare the efficacy of single drug treatment with that of drugs used in combination. In Italy, tests are being conducted using a three-drug combina- tion regimen of Cytoxan, methotrexate and 5- Fluorouracil (CMF). Thus far, the combination regimen appears to be more effective than L-PAM. Results from a recent study of patient response to chemotherapy indicate that women whose tumors are not dependent on estrogen may re- spond better to chemotherapy than women whose tumors are estrogen-receptor positive. Additional surgical adjuvant trials are combin- ing other types of chemotherapeutic agents that appear to be effective in combating cancer cells. The relative effectiveness of the agents included in the various trials will be determined so that the uses of chemotherapy can be further refined. ENDOCRINE MANIPULATION The endocrine glands secrete hormones that affect breast growth, breast function, and, often, the growth of breast cancer. Three endocrine glands secrete hormones that appear to have an effect on the growth of breast cancer: the ovaries, which secrete estrogen (before menopause) and pro- gesterone; the adrenal glands, which produce androgens (male growth hormones) and estrogen (after menopause or if the ovaries have been re- moved); and the pituitary, which regulates the proper function of and triggers glandular secre- tions of many endocrine glands in the body. Endocrine manipulation (hormonal therapy) is frequently prescribed instead of cell-killing drugs for breast cancer patients whose tumors appear to be influenced by hormones. The estrogen-receptor assay can determine whether a tumor is dependent on estrogen for its growth. (See Diagnosis.) If the tumor is estrogen-dependent, the balance of estro- gen in a woman’s body can be manipulated either by surgery or by large doses of hormones which are prescribed as adjuvant treatment or later if the cancer reappears. About two-thirds of all patients with positive estrogen-receptor assays respond favorably to endocrine therapy, compared to about 5 percent of those patients with negative estrogen-receptor assays. Ablative Therapy. Animal studies indicate the pri- mary stimulus for the growth of some breast cancers appears to be the hormone prolactin pro- duced by the pituitary gland located in the brain. However, it also appears that some component of estrogen must be present for prolactin to be able to stimulate the growth of some cancerous tumors. If a tumor is estrogen-dependent, the woman'’s menopausal status is a major factor in determining 157 34 what kind of endocrine therapy should be pre- scribed. The reason ovariectomy (removal of the ovaries) results in tumor regression is that it de- prives the tumor of estrogen. Radiation sometimes is used instead of surgery to destroy the function of the ovaries. The drop in estrogen levels when the ovaries are irradiated takes four to six weeks. In premenopausal women with positive estrogen- receptor tumors, ovariectomy provides about a 65 percent chance of tumor remission. The adrenal glands of all women, including postmenopausal women and women who have had ovariectomies, secrete androstenedione, an androgen-type male hormone which their bodies then convert into estrogen. Following menopause or removal of the ovaries, adrenalectomy (removal of the other estrogen-producing glands) reduces estrogen in the body and should interfere with the growth of an estrogen-dependent cancer. If ovariectomy fails, the woman’s chance of respond- ing to removal of her adrenals decreases.!%® Ad- renalectomy can be performed at the same time as ovariectomy, or it can follow ovariectomy when the cancer again progresses. In postmeno- pausal women with estrogen-dependent tumors, adrenalectomy is sometimes used as the initial procedure. The effect of adrenalectomy combined with radical mastectomy is still unclear. Prelimi- nary work in this area requires follow-up. The pituitary gland is the controlling organ for the adrenal glands and ovaries; it also produces prolactin. Therefore, hypophysectomy (removal of the pituitary) eliminates a hormone-dependent tumor’s growth source. A patient’s response to previous hormone therapy is a factor in deter- mining whether hypophysectomy will be success- ful. Fifty-five percent of patients responding to ovariectomy can be expected to improve after re- moval of the pituitary. In postmenopausal women who have previously had hormone therapy, more than 70 percent can be expected to improve.'?? Additive Therapy. Large doses of estrogen (in post- menopausal women), androgen, or progestin also can result in tumor regression. The mechanism by which this effect occurs is not known. Paradoxic- ally, high doses of estrogen appear to be as suc- cessful in treating breast cancer as endocrine manipulation by surgery; both cause tumor re- gressions in 30 percent of postmenopausal patients.!6® Drugs known as anti-estrogens also are being used to inhibit estrogen-dependent tumor growth. Tamoxifen is an anti-estrogen drug which, in pre- liminary studies in the United States and Canada, appears to produce a 30 percent regression rate among both pre- and postmenopausal women with advanced breast cancer. Women with estrogen- receptor positive tumors appear to respond most favorably to Tamoxifen.'4s IMMUNOTHERAPY Immunotherapy is based on the theory that if a substance in the body’s immune system could stimulate the formation of cancer-fighting cells, such an immunologic response could destroy an invading cancer cell and leave normal cells un- harmed. A great deal of research is underway to apply immunologic principles to the treatment of breast cancer. Immunotherapy is, as yet, unproven. 35 It reportedly has been useful in treating some types of cancer, but thus far results are still incon- clusive about cancer of the breast. Two substances, a strain of tuberculosis bacilli known as baccille Calmette-Guerin (BCG) used to vaccinate humans, and levamisole, an agent used to treat parasitic infections, have shown some ability to destroy cancer cells. When used alone, neither substance demonstrates cytotoxicity. Both agents have been tested on small groups of breast cancer patients in conjunction with radia- tion or chemotherapy. Because the sample patient groups were small and the tests lacked control groups, test results are inconclusive, but further tests may be warranted. Rehabilitation reast cancer treatments produce problems for patients in varying degrees. After mas- tectomy, the area affected by surgery usually is covered with tight pressure dressings to protect the chest and reduce pain when the patient coughs or turns, and one or more vacuum drains collect fluid from the incision for several days. Because mastectomy is extensive surgery, the patient will experience some pain in the operative area and stiffness in her arm or shoulder. Physical sensations in areas of amputated tissue are common after surgery; the patient may have tingling, pins-and-needles, or painful feelings in the “phantom” breast. These sensations usually dis- appear gradually .?3® Unless serious complications set in, the breast cancer patient should be able to begin a gradual re- turn to all pre-surgical activities within a few weeks after surgery. Some women regain almost full arm and shoulder mobility by the time they leave the hospital; others may need several months of in- creasing exercise before they can resume their former levels of activity. Each woman must take clues from her body and follow the advice of her physician, surgeon, nurse, or physical therapist to determine what activities she can and should at- tempt. The visit from a volunteer from the Amer- ican Cancer Society’s Reach to Recovery Program also can be helpful to the breast cancer patient during this period. (See Information and Education Programs and Resources.) COMPLICATIONS FROM SURGERY In addition to infection or other medical prob- lems that any type of surgery can generate, a radical mastectomy may cause a lymphedematous (swollen) arm, numbness of the chest wall and arm, and shoulder stiffness. Lymphedema. Many of the vessels which drain in- fection-fighting lymphatic fluid from the arm must be removed during surgery, and others are severed when the axillary nodes are removed. As a result 36 lymphedema may develop; i.e., excess fluid can collect in the patient’s arm causing it to swell. As a consequence of this complication, the patient’s arm and hand may become more vulnerable to infection, so that even a slight burn or cut may result in widespread infection and high fever. Lymphedema to some degree affects 50 to 70 percent of all radical mastectomy patients but is severe in only about 10 percent of these cases.?*° Vascular specialists have tried many corrective techniques, but no effective surgical method has been found to eliminate lymphedema once it has occurred. Although it is impossible to avoid in- juries, infections, and exacerbation of lymphedema, all women who have had radical mastectomies should ® wear gloves when gardening and when using strong detergents, etc. use a thimble when sewing avoid harsh chemicals and abrasive compounds take precautions against burns, including sunburn have all injections, vaccinations, blood pres- sure tests administered to the unaffected arm avoid restrictive pressure on the affected arm and hand except when used as treatment for lymphedema carry antibiotic ointment and bandages to treat unavoidable injuries, hangnails, etc. If postoperative lymphedema does occur, most cases may be controlled by frequent and sustained arm elevation, regular use of a lightweight elastic custom-fitted sleeve, and intermittent treatments with an inflatable sleeve called a pneumatic pump. Exercises, weight loss, and physical therapy also may be of some help, as recommended by the physician. Arm and Shoulder Stiffness. Although the shoulder nL T———— After mastectomy the patient will experience some pain in the operative area and stiffness in her arm or shoulder. There may be dressings covering the incision and suction drain tubes from the operative site emptying into collecting receptacles. joint is not involved in the surgery, the axillary incision can cause skin tightness and a limitation of movement. The extreme of this dysfunction is known as frozen shoulder. Back pain and neck stiffness also may occur from the weight imbalance caused by the loss of the breast. The weight of bandages and drains also may cause stiffness by placing tension on the muscles. Gentle exercise is encouraged to relax muscles and promote joint movement as soon after sur- gery as the physician decides that drainage and healing have reached their proper states. Most women can begin exercises on the second post- operative day and continue until a full range of arm and shoulder motion is restored. Patients should exercise only to the point of pulling or pain, and should avoid strenuous exercise until the sutures are removed and the incision has healed. Although a full range of arm and shoulder motion can be restored, a woman who has lost her pectoralis major and minor muscles as a re- sult of a Halsted radical or extended radical mastectomy may never regain her full muscle strength in the affected arm, although other mus- cles often will compensate. Some nerves are severed during mastectomy, sometimes resulting in numbness of the chest area, shoulder, and arm. Although tingling and pins-and-needles sensations usually disappear several weeks after surgery, some numbness may be permanent. However, severance of these nerves does not impair the use or function of the arm and shoulder. PROSTHESES After breast surgery, a woman may wonder whether some prosthesis can be used to replace her lost breast. While she is in the hospital, she may wish to look “normal” by stuffing her regular bra with gauze, cotton, or other simple padding. In many hospitals, with the surgeon’s consent, a Reach to Recovery volunteer will visit the woman and give her a temporary Dacron-filled breast form to wear until she heals and can wear a permanent prosthesis. During her visit, the volunteer will show the patient samples of such prostheses and leave a list of stores where they can be purchased, the types and brands available, and their costs. In many cities, stores that sell prostheses are listed in the Yellow Pages of the telephone directory under “Surgical Supplies,”’ “Corsets and Brassieres,” or “Intimate Apparel.” Within four to six weeks after surgery, depend- ing on the sensitivity of the chest wall, most 38 patients can begin wearing a permanent prosthesis which is weighted and sized to match the remain- ing breast. Shopping for her first breast form can be a traumatic experience, as the woman must face her breast loss and acknowledge its absence to a stranger. For some, the initial fitting is best not experienced alone; it may be helpful if a close family member or friend accompanies the patient to provide emotional support. Prostheses are made from many materials. The heavier forms, filled with silicone gel or thick liquid, are more expensive than the lighter foam- rubber and polyester-filled varieties, but give better balance, assume body temperature, and look and feel more natural. There are two basic types of permanent pros- theses: one fits into a pocket sewn into the bra; the other has a surface that interacts with the skin to allow it to adhere to the chest wall. Special brassieres can be purchased that already have a pocket to hold the form in place, or one can be sewn into a regular bra. Because the bra holds the prosthesis, it cannot fall out except during vigor- ous activity. One form can be molded to match the remaining breast to provide a women with “‘the natural look.” An adhesive holds the prosthesis in place so that a woman can go braless and even take showers and baths without removing it.¢! A consumer magazine questioned 848 women who had purchased prostheses about their shop- ping experiences. Many women felt they had been taken advantage of, given a “hard sell,” shown a limited selection of brands and sizes, steered to the most expensive models, and fitted improperly.” The women also were queried about the type of prosthesis they preferred. Some of the women surveyed preferred homemade prostheses to com- mercial models. Although improvised forms may suffice for a woman who has had both breasts re- moved or for a small-breasted woman, their light- ness may cause balance problems, back, shoulder and neck pain, and poor posture in women who have a heavier remaining breast. Two-thirds of the respondents in the magazine survey preferred the heavier-weight types. However, because of the individual needs of each woman, the different types of prostheses could not be rated uniformly.” A breast prosthesis can be worn 24 hours a day, if desired, although a breaking-in period may be necessary. Commercial models are shaped like teardrops, but flat on one side, and feel much like a normal breast. For women who have had Halsted or extended radical mastectomies, there are pros- theses that have a “‘tail” to fit the hollow area near the armpit. Prostheses have been improved as the needs of breast cancer patients are considered more serious- ly. They are now available in different sizes, flesh colors and weights to match the remaining breast. Some prostheses have built-in nipples, and several manufacturers make adhesive-backed nipples that can be attached to prostheses. When shopping for a prosthesis, the woman should wear a form-fitting dress or sweater so the size and shape of the prosthesis can be compared with the remaining breast. Sides, bottom and front should match, and if the prosthesis has a built-in nipple, the two nipples should be on an even line, with an equal distance between each of them and the center of the chest. Custom-made prostheses are expensive, but pre-formed standard-sized breast forms are less costly. This expense is covered, at least partially, by most medical insurance policies. A written prescription should insure payment. Most insur- ance policies, however, have time limits governing the purchase of a second prosthesis, and women who want to have a spare must usually pay for it themselves. If it is not covered by insurance, the cost of a breast form may be deducted as a medical expense on the patient’s income tax. SIDE EFFECTS OF RADIATION THERAPY Irradiation of the breast to treat primary breast cancer does not reach deep-lying organs and seldom causes serious systemic side effects. Wom- en’s bodies react differently to radiation and, be- cause radiation can destroy healthy as well as dis- eased tissue, careful monitoring of the dosage by a skilled radiotherapist can often reduce or elimi- nate treatment complications. Soon after receiving radiation treatments some women may experience side effects. The usual immediate (or acute) side effects include fatigue, redness of the irradiated skin, and difficulty swal- lowing. Delayed (or chronic) side effects of radi- ation may include itching or peeling of the skin, lung inflammation, weakening of the ribs causing them to break easily, nausea, anorexia (loss of appetite), and temporary chest wall and shoulder pain. Ordinarily, women undergoing radiation therapy can continue their daily activities visiting the hospital just for their treatments. Although used to treat an existing cancer, radi- ation itself can cause cancer. Risk-benefit deci- sions must be made in most cancer treatment methods, and it is generally agreed that the future cancer risks posed by radiation are not as great as 39 the immediate risks accepted by neglecting to treat an existing cancer. Especially when the cancer has reached an advanced stage, the immediate pain-re- ducing effects of radiation are judged more im- portant than the risk of future cancer. DIET, NUTRITION, AND SKIN CARE DURING AND AFTER RADIATION THERAPY AND CHEMOTHERAPY While undergoing radiation therapy and chemo- therapy, patients may experience nausea or vomit- ing. Small, frequent meals eaten slowly may help counteract the nausea and vomiting, as may fruit punch, carbonated beverages, soups and crackers. Overly sweet or greasy foods, rapid drinking of liquids, exertion or over-activity may aggravate the problem. Bedtime or between-meal snacks such as milkshakes, desserts, candy, fruit, or cheese and crackers will help raise caloric intake and help to maintain or gain weight. High-protein, high-carbo- hydrate foods are good between-meal snacks be- cause they are low in fat and are digested rapidly leaving the woman hungry for her next meal. Temporary loss of or changes in taste sensations may occur. Foods with tantalizing odors, textures, and eye appeal may make eating more enjoyable. Lemonade, because of its acidity, stimulates taste. A softer diet may alleviate some problems with a dry mouth or esophagus, and using gravies, broths and sauces on foods which may be difficult to swallow may also help. Patients whose chemotherapy causes diarrhea may want to avoid foods like bran and whole ce- reals, legumes and vegetables that contain rough- age, but drink plenty of fluids and eat foods such as bananas, baked potatoes, meat, and milk to replace the potassium lost when diarrhea occurs. For constipation, a high-fiber diet is suggested.’ Patients who experience skin changes from ra- diation should try to avoid any exposure to the sun on the treated area and check with their phy- sicians before using any creams, ointments, or strong soaps. Itching which occurs during treat- ment may be helped by keeping the skin dry and applying corn starch three or four times a day.'®’ SIDE EFFECTS OF ENDOCRINE THERAPY Women who undergo ovariectomy will experience many of the discomforts of women who experi- ence menopause, such as hot flashes and mood swings. Patients who undergo adrenalectomy or hypophysectomy require cortisone daily to main- tain normal body functions. Failure to take the drug can precipitate a life-threatening crisis. Some of these patients also may require replacement of a salt-regulating hormone in the form of fludrocortisone.!®’ Hypophysectomy may result in an inability to conserve body water (diabetes insipidus), caused by the loss of the antidiuretic hormone. This can be controlled by injections or nasal sprays con- taining Pitressin. Women who have undergone adrenalectomy or hypophysectomy should wear a medical identification emblem to alert those who provide emergency medical treatment to their condition. These patients also should carry infor- mation indicating the type of medical treatment they require.'®’ Estrogen taken in large doses sometimes can stimulate the growth of a breast cancer and also may cause fluid retention, tender breasts, and urinary incontinence. Hypercalcemia (elevated blood calcium) occurs to some extent in about 10 percent of patients treated with large doses of estrogen. Severe hypercalcemia causes extreme thirst, lethargy, nausea, vomiting, anorexia, and eventually coma and death. Patients with bone metastasis are most susceptible to hypercalcemia and should be observed closely during additive therapy.'?’ Androgen causes masculinizing side effects which can be disturbing to patients. These include deepening of the voice, an increase in facial hair, and changes in the psyche and libido. Like estro- gen, androgen also can exacerbate tumor growth.!%’ Women taking anti-estrogens may experience 40 various side effects which include nausea, vomit- ing, hot flashes, lightheadedness, headaches, vagin- al bleeding, and itching of the vulva. MEDICAL FOLLOW-UP Because of the tendency of breast cancer to recur and metastasize, breast cancer patients must be watched carefully for the rest of their lives. And it is important that the woman practice monthly breast self-examination on the remaining breast. (See Detection.) Abnormalities or signs that metastases have developed include: persistent coughing or hoarse- ness (indicates possible metastasis to the media- stinum, the lungs, or the pleura), pain in the spine, leg, etc. (bone metastasis), and digestive or elimi- nation problems (metastasis to the liver or the gastrointestinal tract). These are common sites of breast cancer metastasis, but cancer can spread to virtually any part of the body. Although physicians’ recommendations may vary, visits are generally set for every three months during the first two years, every six months for the next three years, and yearly thereafter. At each visit, the physician examines the patient’s opera- tive site, remaining breast, regional lymph nodes, both axillae, lungs, and abdomen. The annual laboratory examination usually includes a blood count, chest and skeletal X-rays, Pap smear, mam- mography of the remaining breast, and pelvic and rectal examination. Bone, brain, and liver scans are ordered regularly by a few physicians but usually are limited to patients with symptoms suggestive of metastatic spread. Breast Reconstruction lthough many women who have had mas- tectomies are satisfied with the physical and psychological benefits of external prostheses, others have great difficulty coping with their dis- figurements. Increasing numbers of women are undergoing reconstructive mammaplasty (breast reconstruction) to replace their missing breasts. The trend toward early breast cancer detection, the growing willingness of cancer surgeons to per- form less than radical breast surgery, recent devel- opments in plastic surgery, and growing public acceptance of other types of cosmetic surgery are helping to make breast reconstruction more feas- ible, cosmetically pleasing, and less expensive than in the past. As less extensive surgical procedures such as the modified radical mastectomy are performed, more women may become candidates for some type of breast reconstruction. However, in spite of the increasing availability of reconstructive mamma- plasty, the number of physicians recommending and of women requesting the operation is still small. One plastic surgeon estimates that about 80 percent of women having mastectomies “will adjust, with the help of an external prosthesis, to the situation. The remaining 20 percent may ex- perience moderate to extreme difficulty; it is this group (at least) which should have the opportunity to discuss reconstruction.” It is estimated only one-fourth of these women will actually decide to undergo reconstruction.’ There are a number of reasons for the small number of reconstructive mammaplasties. The public tends to accept mastectomy more than its correction.*? In addition, many surgeons are as unaware of reconstruction possibilities as their patients. Some surgeons, concerned mainly with the eradication of cancer, fail to mention the possibility of reconstruction to their patients.286 Others do not recommend reconstructive mammaplasty because they fear that surgical 41 implants may cause sarcomas of the chest wall, or because they feel that less radical surgery that would facilitate reconstructive surgery may not remove all cancerous tissue. Some surgeons do not discuss breast reconstruction because they are concerned that their patients might be disappoint- ed in the results. As more is being written about reconstructive mammaplasty in medical literature, doubts among surgeons about the feasibility, safety, and cos- metic success of breast reconstruction are being replaced by a more optimistic outlook. Plastic surgeons are convincing many cancer surgeons that breast reconstruction may greatly improve the quality of some women’s lives. More cancer sur- geons are consulting plastic surgeons before they perform mastectomies in cooperative efforts to improve the possibility for breast reconstruction. For example, a number of surgeons are attempt- ing to avoid excessive removal of skin, use trans- verse incisions, close the incision meticulously, leave thicker skin flaps, preserve pectoralis mus- cles, and bank nipple-areola complexes.** Increasing numbers of articles about recon- structive mammaplasty are appearing in news- papers and popular magazines. As women become more aware of the potential for breast recon- struction, they are taking a more active role in their medical care. Now, many breast cancer patients are requesting information about the sub- ject from their physicians, are choosing surgeons who are knowledgeable about breast reconstruc- tion and optimistic about its feasibility for their patients, and are consulting plastic surgeons for their advice and services. A number of reconstructive techniques now are being used by plastic surgeons. Flap methods con- sist of creating breast mounds from skin and tissue transferred to the chest from other parts of the body. These techniques require multiple hospital- izations at great expense to the patient. Newer methods which restore the breast by inserting sili- cone gel or liquid-filled implants under the skin may require only one operation and hospital stay. Follow-up procedures have been developed to re- construct the nipple and areola and to reduce or enlarge the size of the remaining breast, if neces- sary, to match the reconstructed breast more closely. A 1976 New York Times survey found sur- geons’ fees for the simplest of reconstructive sur- geries from $750 to $1,750 plus hospital costs.2”? More complex methods can cost much more. Some insurance plans cover a major part of breast reconstruction costs, whereas others cover costs only partially, or provide no coverage at all, par- ticularly if they define the procedure as cosmetic surgery. If the costs associated with reconstruc- tive mammaplasty are not covered by insurance, they may be deducted from the patient’s income tax as a medical expense. (See The Financial Im- pact of Breast Cancer, and Resources.) Breast reconstruction in many cases is by no means a cosmetic triumph, but for many women it is a better alternative than the physical disfigure- ment and emotional trauma they may experience if no reconstructive surgery is undertaken. Ideally, the surgeon’s function is to restore the patient’s physical and psychological wholeness as well as to rid her of the disease. Mastectomy may eliminate the cancer, but leave the woman disfigured. In many cases, breast reconstruction can restore the patient’s body integrity and emotional equilib- rium.>3 Because a woman’s decision to undergo corrective plastic surgery is always voluntary, and because she views reconstructive mammaplasty as a positive, constructive step toward physical whole- ness, the physical pain resulting from reconstruc- tion is often borne more easily than that which accompanies mastectomy. As reconstruction techniques improve and as the procedure gains more acceptance from the public and the medical profession, its psychological and social implica- tions may be considerable. Of no small consider- ation is the hope that women, knowing a breast can be rebuilt, will not delay seeing a physician when they discover symptoms of breast cancer. SCHEDULING Plastic surgeons and cancer surgeons differ in their opinions of how long the patient should wait after mastectomy before undergoing reconstructive mammaplasty. The majority of surgeons prefer to wait from 3 months to a year until mas- tectomy wounds have healed and patients have 42 had a chance to adjust emotionally and physically to their loss. Some surgeons advocate waiting as long as 3 years after mastectomy, citing the statistic that 80 to 85 percent of the women who will have a local cancer recurrence will have it within 2 years after mastectomy. They believe it is better to see if cancer recurs before perform- ing reconstruction. Women whose cancers are localized and non- invasive can have their breasts reconstructed at the same time their mastectomies are performed. Surgeons who advocate combining mastectomy and reconstruction in one operation argue that waiting a year or two does not take the patient’s needs and desires into account; most women want a reconstruction as soon as possible, not several years later. Combined procedures, they contend, may alleviate some of the postmastec- tomy trauma experienced by many women, and also may reduce the costs of reconstruction. Other surgeons will not perform combined opera- tions because they believe their patients will be disappointed in the results. They prefer to give a mastectomy patient some time to be without a breast so she will be more satisfied with her new breast after reconstruction. There is no maximum time limit after mas- tectomy for having reconstruction. Patients have undergone breast reconstruction several decades after their mastectomies. CANDIDATES Before accepting patients for reconstruction, plastic surgeons consider a number of factors in each woman'’s history. A crucial factor in deter- mining whether to perform the operation is the woman’s motivation to undergo what is often an arduous and traumatic process. The primary candidates for breast reconstruc- tion are those patients whose cancer is smaller than 2 centimeters with fewer than three posi- tive nodes.3? Some plastic surgeons maintain that women should be able to have their breasts rebuilt even if the cancer has not been controlled. They believe that, although some of these pa- tients will die of metastatic disease, they should not be denied the satisfaction of a breast re- storation in the meantime. However, they do not recommend reconstruction for women whose tumors are large and aggressive or for those with extensive involvement of the axillary nodes. Advanced age, obesity, and the presence of other diseases may preclude some women from having their breasts reconstructed.?’” In addi- tion, many plastic surgeons prefer not to perform implant surgery on women who have had radia- tion therapy or skin grafts on their chests. Such patients are usually referred to plastic surgeons who specialize in performing the more compli- cated flap techniques. Women who have undergone Halsted radical mastectomies generally are not considered good candidates for the implant method of breast reconstruction because they lack a sufficient amount of skin and pectoral muscle to permit a pocket or chest cavity to be formed to accom- modate the implant. Although most of these woman must rely on flap methods of breast re- construction, some have had breast mounds created without the preliminary use of flaps. In some patients spacers can be inserted to fill in the chest and arm depressions created by radical surgery. IMPLANT METHODS Although several brands of implants are available there are basically two types: inflatable im- plants that are filled with a saltwater (saline) solution, and silicone-gel-filled implants. It is important that the silicone-gel implants are not confused with the controversial liquid silicone injections which can cause dangerous side-effects and have been outlawed in some states. Silicone gel implant methods were first used by plastic surgeons to enlarge women’s breasts, but since about 1970, they have become valuable techniques for reconstructing the breasts of those who have had simple or modified radical mas- tectomies. Silicone is an inert material which rarely produces inflammation or other reactions, even during prolonged contact with body tissues and fluids. In addition, because it is a gel, it can be made with the consistency and resilience of normal breast tissue. The silicone gel is contained in soft, seamless saucer or tear-shaped silicone or polyurethane pouches so that it cannot migrate into other sections of the breast. Although unconfined silicone gel is cohesive enough to be inserted in the chest cavity without risking the infiltration dangers associated with liquid silicone, the major- ity of silicone implantation is done by using in- ternal prostheses. The silicone gel-filled pouch is inserted through a small incision at the base fold area of the breast- to-be and positioned underneath the breast skin. Occasionally the implants are placed under the pectoralis major, the chest muscle which remains 43 after all mastectomies except the Halsted and extended radicals. Evidence of cancer developing in reconstruct- ed breasts containing prosthetic materials other than silicone has been reported.’* The National Cancer Institute is currently conducting animal experiments to determine whether silicone im- plants may be carcinogenic in humans. Inflatable implants also are used by plastic surgeons, although not as frequently as are sili- cone-gel implants. After implantation, a saline solution is injected through a valve into the saucer-shaped implant and the wound is then closed. Additional saline cannot be injected in this manner, however, as increased pressure on the walls of the implant would cause leakage through the puncture hole.5® If the surgeon needs to reduce the size of the prosthesis, it must be removed from the women’s body and replaced with a smaller one. The major draw- back of inflatable implants is that they can leak and deflate. In choosing an implant size, a plastic surgeon must consider two factors. First, the tighter the overlying skin, the smaller the implant must be. However, if the skin quality is good but tight, vigorous and repeated massage over several months will stretch the skin to allow insertion of a larger implant.?°! Second, the size and shape of the remaining breast may need to be altered to match the reconstructed breast. It does not benefit the woman to create a well-rounded, young-looking breast if the remaining breast is aged and drooping.?’® A subsequent operation can reduce the size of the remaining breast (re- duction mammaplasty, subcutaneous mastec- tomy, or simple mastectomy), increase its size (augmentation mammaplasty), or otherwise change its shape by implants so that it matches the reconstructed breast more closely. A woman usually can leave the hospital 2 or 3 days after reconstructive surgery, but must keep her elbow close to her side for several days to a week. Within a month she should have complete use of her arm, although she should follow her physician’s recommendations regarding strenuous exercise such as golf, tennis, and swimming. Some plastic surgeons recommend that the patient wear a specially fitted bra day and night for as long as 3 months so her new breast or breasts will take on the desired shape. Some concern has been voiced by surgeons that breast implants hinder the detection of a cancer recurrence, but advocates of reconstruc- tive mammaplasty argue that implants do not impede the detection of a second cancer. The most common complication of the im- plant method of breast reconstruction is necro- sis (death) of the covering skin. If the skin flap covering the implant is thin, there may be a gradual thinning or discoloration of the skin over a large area of the implant. Occasionally, sloughing of skin will necessitate the removal of the implant. Other possible complications include blood clots, hemorrhage, infection, and fluid excess. Improper placement of the implant can some- times lead to an undesirable breast shape, necessi- tating additional surgery to rearrange the implant inside the chest cavity. Efforts to prevent the mi- gration of breast implants have not always suc- ceeded, despite the use of implants that have Dacron fixation patches on their surfaces to attach the prosthesis to the chest wall. The major problem of implant methods of breast reconstruction is the hardening of the breast into a baseball-like shape. This hardening is caused by the formation of a fibrous capsule of scar tissue around the implant. These contrac- tures, which can occur several months or years after reconstruction, can result in abnormalities of shape and position of the new breast, including lumps caused by buckling of some thin-walled implants. Contractures sometimes can be prevented by the initial insertion of a larger implant to counter- act the space-crowding tendencies of the early contractile-scar stage. Later, the implant can be re- placed with one of a more suitable size.%¢ Once contractures have occurred, a number of methods can be used to solve the problem. Breast massage is sometimes recommended to separate the contractures from the implant. The plastic surgeon can rupture the contractures manually; this procedure can usually be performed in the physician’s office without anesthesia.?’> Some plastic surgeons recommend a minor surgical pro- cedure to slice the fibrous capsule allowing it to gape and causing the prosthesis to assume a more natural shape.?”® Implant methods of breast reconstruction are not supported by all physicians. The procedure has been criticized by those who believe that the goal of saving lives is being compromised by sur- geons who perform less extensive mastectomies to facilitate future breast reconstruction. Plastic sur- geons, on the other hand, argue that in most cases, surgeons could treat breast cancer just as 44 effectively by performing modified rather than radical mastectomies, regardless of whether subse- quent reconstruction is planned. (See Treatment.) FLAP METHODS Plastic surgeons were experimenting with methods of breast reconstruction as early as the 1930’s. Attempts were made to fashion breast mounds from flaps of skin and body tissue which were laboriously transferred to women’s chests from other parts of their bodies. Women who have undergone Halsted or ex- tended radical mastectomies are the primary candidates for flap methods of breast reconstruc- tion because so much tissue and skin has been re- moved that it is often difficult or impossible to use implant methods. The patient’s motivation to undergo the flap method of breast reconstruction is crucial, for the process generally involves four or five hospitalizations and a great deal of expense. The first hospitalization involves the creation of a flap that will eventually be transferred to the woman's chest. Two parallel incisions are made to free a roll of skin and fatty tissue from the area chosen as the donor site. Flaps can be created from the woman’s upper and lower abdomen, thighs, buttocks, or back. The roll is then shaped, while still connected at both ends, into a tube called a pedicle. Once the pedicle has healed, the patient is re- admitted to the hospital for a second operation during which one end of the pedicle is severed and attached to the patient’s chest. After waiting sev- eral months to make sure the pedicle’s blood sup- ply has been established, the patient undergoes a third operation in which the lower end of the pedicle is severed and the tube of tissue is twisted and sutured to cover the area of the missing breast. A bit of the tube may also be used to fill in any hollow that might have been left under the patient’s collarbone by extensive surgery. After a sufficiently thick breast covering has been created by the tube, an incision is made at the base of the breast mound and an implant is inserted to create a breast shape that conforms as closely as possible to the shape of the remaining breast.!”® The number of incisions required to perform the flap method of breast reconstruction causes more scarring than implant methods,** and sym- metry between a reconstructed breast and the opposite breast is difficult to achieve, especially if flap tissue is scarce and the remaining breast is pendulous. Either an augmentation or reduction mammaplasty on the remaining breast is usually required as a follow-up operation. In addition to their aesthetic disadvantages, flap methods of breast reconstruction can result in infection and body rejection of the flap. As im- plant methods are perfected and as less extensive surgery replaces radical mastectomy as the pre- ferred surgical treatment for breast cancer, it is likely that the use of flap methods will become obsolete for all but the most disfiguring mastec- tomies. AREOLA-NIPPLE RECONSTRUCTION Many women are content with the results of breast reconstruction and do not want to undergo more surgery to have a nipple grafted or recon- structed on their new breast. However, for some women, saving the nipple during mastectomy or reconstructing it later is crucial to their psycho- logical well-being. In recent years plastic surgeons and cancer sur- geons have been working together to bank (or preserve) a woman'’s nipple onto another part of her body until it can be replaced on the recon- structed breast. While some surgeons replace the areola and nipple at the time of reconstruction, others do it as a separate operation weeks or months later. Before a nipple is banked, it must be checked by a pathologist to ensure that there is no cancer present. Normally, a slice of tissue immediately beneath the nipple is biopsied before the nipple is sewn on the thigh or abdomen (the two most 45 common storage sites). Cancer does not involve the nipple in most breast cancer cases, but even the slight chance of cancer involvement in the nipple has caused some surgeons to doubt whether banking should be practiced. Often, only the areola is banked because it is pigmented skin which cannot easily be duplicated and, unlike the nipple, it has no ducts that might harbor cancer. Grafted nipples are not always the same after they have been transferred to the reconstructed breast. Some discoloration occurs, and renewed sensitivity is rare. When the nipple is not or cannot be preserved, a substitute can be created by a number of methods. Half of the nipple and areola from the remaining breast can be removed, and the halves can be reshaped into new, somewhat smaller circles. Some pigmentation is lost by this process, and generally the sensitivity of the re- maining nipple is lessened. The texture and ap- pearance of the areola and nipple can be approxi- mated by using dark-colored skin grafts from the patient’s labia or earlobe, by tatooing the skin, or by applying ultraviolet light to permanently pigment a skin graft from another part of the body. To create a prominence similar to that of a nipple, some surgeons have inserted the patient’s navel, a button of subdermal gel, or a disc of cartilage under the skin graft. The nipple and areola can also be simulated by grafting labial tissue onto the center of the rebuilt breast and then suturing the center of the graft into a raised nipple. Recurrent, Metastatic, and Advanced Breast Cancer M edical follow-up is strongly recommended throughout the breast cancer patient’s life. A cancer in the remaining breast is usually consid- ered to be another primary cancer and is treated as such. About 1 out of 10 women who survive for 3 years after initial treatment eventually develops breast cancer in the other breast. Five- year survival rates of women with a second pri- mary cancer are similar to those of patients with comparably staged and treated cancers in one breast. RECURRENCE A common site of first recurrence is the chest wall in the area of the primary cancer. When a breast cancer patient shows signs of cancer recurrence, the physician conducts a review of her medical history and symptoms and performs a physical exam and necessary diagnostic tests to determine the extent of the disease. This evaluation usually includes a mammogram, chest and skeletal X-rays, liver function tests, blood count, blood chemis- tries, and urine analysis. If the recurrent cancer appears to be limited to the breast and if the wo- man was treated by a procedure less extensive than the Halsted radical mastectomy, she usually is treated by removal of the breast or additional breast tissue and elimination of the axillary lymph nodes, by radiation therapy, or by a combination of surgery and radiation therapy. METASTATIC DISEASE Metastatic breast cancer is characterized by evi- dence of breast cancer cells in distant parts of the body. Cancer cells which escape the breast travel through the lymphatic system and the blood stream to other areas of the body. Breast cancer 46 most commonly metastasizes to the lungs, visceral organs such as the liver and brain, and to the skeletal system. When breast cancer metastasizes, particularly if more than one organ system is affected, the pa- tient’s life expectancy is shortened. Survival length depends on the organ involved and the re- sponse to therapy. Diagnostic tests for specific areas of suspected metastasis include an electroencephalogram (EEG), brain scan, and myelogram (X-ray of the spinal cord) to detect metastasis to the central nervous system. A bone scan and a bone biopsy may help diagnose a skeletal or bone marrow metastasis, and liver scan or liver biopsy for metastasis to that organ. Endocrine manipulation and chemotherapy are used to treat breast cancer that has spread through- out the body. Site-specific radiation therapy and surgery are used to relieve symptoms of pain and obstruction. The result of the estrogen-receptor assay (performed on a specimen of tissue obtained at biopsy) plays a large part in indicating whether metastatic disease could be interrupted by endoc- rine therapy. ADVANCED (OR TERMINAL) DISEASE Metastatic disease is characterized as advanced (or terminal) when the spread of cancer can- not be controlled by surgery, radiation, chemo- therapy, or hormone therapy. Patients with metas- . tatic disease can live for years, but when the dis- ease has reached an advanced or terminal stage where death is imminent, only palliative (symp- tom-reducing) treatment should be used. (See Coping with Advanced [or Terminal] Illness.) The Financial Impact of Breast Cancer he costs of breast cancer are difficult if not impossible to determine. In addition to phy- sician, surgeon, and hospital fees, the breast cancer patient must pay for numerous tests, adjuvant treatment, prosthesis, and possibly rehabilitation therapy. The costs of such procedures vary widely, depending on the age of the patient, stage of the disease, extent of treatment, and local fee struc- tures. For example, the cost of a set of mammo- grams can range from $10 to $120. CANCER COSTS Hospital care, physicians’ services, research, con- “struction, drugs, and nursing home care comprise the services included in estimating direct costs of cancer care. Based on anticipated costs for 1976, a recent estimate of total direct costs of cancer treat- ment in this country was placed at about $6 bil- lion per year. When combined with the indirect costs of cancer such as the patients’ lost earning power and productivity, the total costs of cancer are estimated to cost the country approximately $30 billion each year.?*' In addition, income and productivity lost by family members who care for the patient must be considered, but no estimates for these costs exist at present. Hospitalization. Hospital care is the single most im- portant direct cancer cost; in 1976 $3.5 billion was spent for hospital care for cancer patients.?*! The National Cancer Institute conducted a study in 1969-1970 of hospitalization costs for patients with cancer. The average hospital stay lasted 15.6 days and cost a total of $1,399 per admission. This figure was based on hospital costs of $90 per day.?* By 1977, the American Hospital Associa- tion reported the average patient expense per day for community hospitals had risen to $181.12.143 These figures were for hospital costs alone. They did not include the cost of diagnostic proce- dures, surgeons’ fees, chemotherapy, radiation therapy, prosthetic devices, reconstruction, follow- 47 up examinations, or rehabilitation therapy. Costs of Treating Primary Breast Cancer. The changes in costs of treating primary breast cancer from 1951 to 1964 and from 1964 to 1971 were reported in a study of patients treated at the Palo Alto Medi- cal Clinic and the Stanford University Hospital. The costs incurred by breast cancer patients were recorded from the time the patient first visited a physician with a breast lump until six months after mastectomy. The average cost for breast can- cer treatment was $739.39 in 1951 and $1,503.93 in 1964. While part of this increase was due to in- flation, the increased use of radiation therapy was the primary reason for the difference in treatment costs between 1951 and 1964. In 1964 more pa- tients were treated in some way with radiation, and patients receiving radiation therapy received almost twice as many treatments in 1964 as pa- tients in 1951. Additional diagnostic X-rays, lab- oratory tests, and use of a postoperative room also added to the increased costs. Although the average hospital stay was reduced from 12.7 days to 10.2 days during this period, the combined costs of radiation treatment and additional tests considerably outweighed the savings from a short- ened period of hospitalization.2® From 1964 to 1971 the average costs of breast cancer treatment rose from $1,503.93 to $2,356.71. Here, several cost-saving factors must be considered: the average hospital stay declined from 10.2 to 8.9 days; the modified radical mastectomy, a less costly surgical procedure, was used on 74 percent of the patients (all patients in 1964 had radical mastectomies); the average cost of operating room time was reduced, and the number of radiation treatments slightly declined. Changes incurring an increase in costs were largely due to use of more expensive inpatient drugs and to some extent an increase in the number of lab tests, even though a shift to lower-priced lab tests was evident.?6® The decline in the average hospital stay for pa- tients undergoing treatment for a primary breast cancer from 1951 to 1971 appears to be the most significant cost-saving factor. However, as previous- ly mentioned, hospitalization remains the greatest expense. Just as treatment by radiation and the modified radical mastectomy affected costs in the studies of patients treated from 1951 to 1971, it can be assumed that the increased use of chemo- therapy in the 1970s is a significant addition to the cost of breast cancer treatment. Costs of Advanced (or Terminal) Cancer. Many of the costs for breast cancer are incurred by hospitali- zation charges after the year of diagnosis.?*! Cancer Care, Inc. is an agency which specializes in providing support and counseling to advanced cancer patients, their families and responsible friends. Several years ago the agency conducted a study of 115 client families who had received its services from the beginning of 1971 until the end of March 1972 to determine the costs associated with caring for advanced cancer patients. Families who were available and physically and emotionally able to respond reported cancer-related ex- penses ranged from $5,000 to more than $50,000. The median cost was $19,054.38 Several factors determined the seriousness of the financial consequences of advanced cancer: the amount of family income; the number of per- sons supported by the income; the length of the illness; and the services needed.3® Three cost items were reported by all 115 fam- ilies and totaled 71 percent of all costs: hospital, physician, and burial expenses. The cost range for hospital services far exceeded other categories of expenditures. Hospital costs ranged from less than $800 to more than $45,000. Seventy-three percent of the families paid more than $5,000 to hos- pitals, and half the families had hospital expenses over $10,000.38 Costs for physicians and surgeons accounted for 12.3 percent of the total accumulated costs. Because many families included these expenses in their tabulations of hospital costs, physicians’ fees could not be determined accurately as a separate item in the study.3® Burial expenses accounted for 7.5 percent of the total costs; these costs ranged from $300 to $4,500 per family.3® In addition to hospital, physician, and burial service expenses, over half of the families surveyed reported additional costs for drugs, patient trans- portation, homemakers, nurses, medical dressings and equipment, wigs, dentures, prostheses, labor- 48 atory tests, and special treatment such as oxygen, radiation, and chemotherapy.3? INSURANCE In view of the tremendous costs the breast cancer patient will incur, adequate health insurance is a must to avoid financial disaster. In 1975, more than 165 million people under the age of 65 were covered by private health insurance, often through the wage earner or wage earner’s employer. Group health insurance comprises nearly 80 percent of the coverage provided by private insurance com- panies. Further, in 1975, the amount disbursed under group policies was nearly six times that paid under individual policies. Those 25 million persons over 65 were covered by Medicare. But over half held private policies to supplement Medicare bene- fits.!”® Coverage. The type of coverage enjoyed by these Americans bears closer scrutiny. Cancer can be considered a catastrophic medical expense in many cases and corresponding coverage — that is, plans having at least $10,000 in maximum bene- fits — is important. In 1976, some 92 million people were extended catastrophic protection under major medical plans, 41 million under Blue Cross-Blue Shield, and 10 million under other arrangements, for a total of 143 million Ameri- cans insured against catastrophic illness.” For Americans holding such health insurance policies, the costs of cancer may be manageable. Sanguine as this summary might appear, there still are problems—even for those having catas- trophic coverage. Treatment over an extended period of time, repeated hospital admissions, sophisticated monitoring and diagnostic tests, drugs, etc., can drive the cost well over the $10,000 maximum. The patient or her family must find a way to bear the additional cost. Further, catastro- phic policy coverage may vary based on each company’s differing definitions and requirements. Very few people understand the extent of their policy coverage before an illness and may be un- pleasantly surprised by the costs not covered. Nevertheless, insurors and insurees agree that the patient with existing coverage at the time of diag- nosis will have some financial benefit. Older or low-income patients who are eligible for Medicare and/or Medicaid benefits should be covered for about 80 percent of the costs. Private medical insurance policies usually will pay the remaining 20 percent. However, because some physicians bill their patients directly, rather than billing Medicare for their services, any cost differences between the fee charged by a physician and the set payment amount paid by Medicare for a medical procedure or service must be borne by the patient. Elderly patients can face additional financial hardship if medical costs exceed Medicare lifetime reserves and they have no additional insurance to pay ex- cess costs. If eligibility requirements can be met, the Veterans Administration can be another source of benefits for the cancer patient. In some circum- stances, eligibility may extend to the spouse or child of a veteran. Unfortunately, many people are unaware of the type and extent of coverage their health policies supply. For instance, many policies do not cover outpatient care, chemotherapy, or expenses other than hospital room and board. Some policies place an upper limit on the amount of coverage for any one condition; this limit is often only $10,000.12! New Policies. The woman with a history of cancer applying for new or additional insurance may have difficulty obtaining a new policy. And, even when she is issued a policy, it may contain certain re- strictions. It may exclude coverage for cancer or major medical expenses; the premiums may be higher than for healthy persons; and the maxi- mum dollar benefits allowed may be reduced. Obtaining personal life insurance can be a prob- lem for breast cancer patients. Insurance com- panies use current statistical data for survival rates by cancer type. Breast cancer patients may have to have their physicians certify that they have been free of cancer for 5 or even 10 years following surgery before a life insurance policy is issued. If the breast cancer has not been controlled, no in- surance plan will extend coverage. Concern over health insurance benefits can be a major factor for cancer patients considering a change in employment. The American Cancer Society, California Division, found that insurance “appears to be one of the major barriers to chang- ing jobs for both patients and their spouses. There was tremendous reluctance to give up existing coverage because of the fear of not getting adequate coverage on a new job and the waiting period before eligibility to join a new employers’ health plan.”!? If a breast cancer patient is covered under her husband’s insurance plan, this feeling of being locked into a job extends to him as well. A num- ber of policies exclude coverage for a pre-existing condition or require waiting periods of 6, 10, or even 24 months before claims can be filed for a condition for which the individual has been treated before becoming a member of the plan.?’* Some insurance companies offer special cancer coverage, but like other insurance policies, the ad- ditional benefits of these policies should be ex- amined closely. Pre-existing condition clauses may exclude cancer benefits if evidence of cancer has been discovered 1 year before and another year after the policy is in effect. Discrimination. In 1977, the Mayo Clinic conducted a survey to determine if cancer patients were being discriminated against by insurance companies, em- ployers, and vocational rehabilitation programs. Of the 940 survey respondents, 208 claimed that they had been discriminated against, and 90 percent of the allegations concerned health insurance. Pa- tients claiming health insurance discrimination re- ported that discrimination took the form of cov- erage refusal, extended waiting periods, insurance cancellation, coverage exclusion, or increased premiums. 65 A team of medical evaluators from Mayo ex- amined each patient’s diagnosis and claim of dis- crimination to assess the reasonableness of under- writing actions considering generally accepted prognoses and found that about one-fourth of the claims were justified. Although they believed that the use of increased premiums and exclusions of coverage were reasonable, the evaluators judged insurance cancellation and application refusals to be less justifiable. The study conceded that cancer patients are subject to insurance related problems, but emphasized that “many of what are viewed by cancer patients as acts of discrimination are considered by the insurance industry to be sound business practices.” The study also e found that insurance companies do differ- entiate among the seriousness of cancer types for underwriting purposes. There did appear to be a lag for underwriting policies to reflect improved survival statistics, however. ® considered 36 percent of underwriting actions for individual health insurance to be unrea- sonable or possibly unreasonable. ® concluded that insurance coverage was avail- able for most cancer patients 2 to 3 years following treatment.’ FINANCIAL ASSISTANCE Ideally, at the onset of illness, breast cancer pa- tients should be counseled on what to expect in terms of financial outlay. Whenever possible, the physician should supply patients with information on local programs or agencies which offer finan- 49. cial assistance. Many organizations throughout the United States provide financial counseling and aid to breast cancer patients. Some of them have restric- tions such as maximum income level or the degree of illness. Agencies such as Catholic Charities, the American Cancer Society, Jewish Social Services, and Cancer Care, Inc. can be sources of financial counseling and assistance. The National Cancer Institute funds the Cancer Information Service, in cooperation with the American Cancer Society, and in most cases this free service will be able to supply a list of available resources in a particular area. Cancer patients who belong to unions, fraternal groups, or other organizations should investigate the types of assistance that may be available through their memberships. Local Social Security offices and welfare departments may also be able to provide some financial aid. (See Resources.) EMPLOYMENT Breast cancer patients who wish to enter or re- enter the job market may face difficulties because of company policies which discriminate against them, even though they are fully employable. Dis- crimination of this nature is hard to prove. General- ly, employers will not cite cancer as the reason for job refusal, since such discrimination is illegal. A case in New York City provides an excellent example of overt discrimination and the kind of obstacles a woman who has or has had breast can- cer often must overcome. A woman who had had a mastectomy applied for a job at a large depart- ment store and was hired the following day to sell handbags. Then, after mentioning in a conversa- tion that she had had a mastectomy several months earlier, she was fired. Because of the adverse pub- licity the store received when the incident was made known, the woman was re-offered the job. The management at the store argued that she should have submitted a physician’s statement assuring that she was capable of performing the job. It is certainly reasonable that an employer be told that a prospective employee’s health will not interfere with her ability to fulfill her responsibilities. However, automatic disqualification of cancer pa- tients is illegal.?"? Physicians of breast cancer patients who wish to enter or re-enter the job market can serve their patients best by supplying them with full infor- mation and advice regarding their prognoses. Women should not be encouraged to seek employ- ment until their condition has stabilized, so that 50 potential employers have some assurance of con- tinuous service.%® A study conducted in 1976 by the American Cancer Society’s California Division reported dis- crimination against cancer patients in all aspects of employment: hiring and firing, job assign- ments, attitudes, and benefits. The survey sample consisted of individuals from 25 to 50 years of age who, at the time their cancers were diagnosed, were employed in fields requiring some special education or on-the-job training. The sample was limited to the “most employable’ people in the work force, i.e., people whose employability would not be affected by other factors, such as age or inexperience. These factors were excluded from the survey sample so that if the discrimina- tion was due to cancer treatment, it would not be obscured. It was assumed that if these highly- qualified individuals experienced discrimination, people with lesser qualifications would experience equal or greater problems. The individuals selected for the study had some of the most common types of cancer: head and neck, breast, and colon and rectum. !? Twenty-two percent of the cancer patients interviewed reported that they had been ‘rejected for jobs because of previous cancer treatment,” “nearly one-fourth felt that they had been the targets of negative attitudes or discrimination in their jobs,” and 19 percent believed that their “working conditions or salary levels had been ad- versely affected.” Almost two-thirds of part- time workers and 40 percent of unemployed people were unable to find full-time jobs, a fail- ure which they attributed to their history of can- cer. Five percent experienced reduced health benefits or exclusion from group health plans and 8 percent had difficulty obtaining life insurance.'? On the other hand, almost half the patients in- terviewed (46 percent) had never had employment problems traceable to their cancer. Over 75 per- cent reported salary increases, many because of increased responsibilities or promotions. Many of those who continued to work for the same em- ployer after their cancer diagnosis received the same health and insurance benefits as other employees. 2 Discrimination against breast patients is not only psychologically and financially damaging to the victim and her family, but it is also disadvan- tageous to society as a whole. The patient’s medical costs as well as lost productivity and in- come must be borne by the rest of the popula- tion.2'* The benefits of advances in the treatment of breast cancer that are allowing more and more women to live normal life spans are diminished if these women are then barred from continuing productive roles in society. Concern on the part of employers regarding the economic feasibility of employing people with recent histories of cancer generally has related to health insurance rates, compensation claims, and the cost of continuing income if an individual becomes disabled.?*? Many employers believe that cancer patients will be problem employees, have physical limitations, and high turnover and absenteeism rates. However, a 1972 study conducted by the Metropolitan Life Insurance Company of employ- ees with a history of cancer concluded that the selective hiring of persons treated for cancer is sound management policy. The Metropolitan study found no difference in turnover rates of cancer patients compared to other employees. The employment records for the cancer groups were good, absenteeism was average, and their work performance was adequate.?85 The results of a survey of cancer patients employed by the Bell System Operating Telephone Companies (American Telephone and Telegraph) in 1972 are also very encouraging to breast can- cer patients who want to rejoin the work force. After a period of hospitalization and recupera- tion, 85 percent of the breast cancer patients were able to return to their jobs.?5? The Bell System’s experience with its employees who have had can- cer could be duplicated in almost every industry. Recovered cancer patients should no longer have the problems they once had in re-joining the work force, partially because of improvement in dis- ability benefits and hospital insurance, and be- cause of improvements in cancer diagnosis, treat- ment, and rehabilitation. For the cancer patient who suffers a handicap as a result of treatment, the Vocational Rehabili- tation Act of 1973 provides vocational rehabili- tation services to handicapped individuals.26? A portion of the Mayo Clinic’s study of dis- crimination toward cancer patients addressed . cancer patients’ accessibility to and use of state vocational rehabilitation agencies. Information was sought on the services used by cancer patients and what programs had been implemented or proposed in accordance with the 1973 Act. The study found that only 15 percent of the cancer patients surveyed were aware of their eligibility for such services, and thus the Vocation- al Rehabilitation Act “has not had a substantial 51 impact on the rehabilitation of cancer patients.” Because special programs for cancer patients are conducted by only five states (Delaware, Florida, Michigan, New York, and Texas), nationwide data indicate that the Act has had “little impact in increasing the number of cancer patients served.” The study also determined that some of the med- ical criteria used in evaluating cancer patients’ eligibility for vocational rehabilitation services seemed unreasonable, 65 In addition to providing vocational rehabilita- tion programs, the Vocational Rehabilitation Act prohibits discrimination against qualified handi- capped individuals by businesses having Federal Government contracts in excess of $2,500. Busi- nesses having 50 or more employees and con- tracts over $50,000 may not discriminate and must have an affirmative action program to hire, among other groups, the handicapped. Discrim- ination complaints are filed with the U.S. Depart- ment of Labor, and if they are upheld after re- view, the Secretary of Labor may cancel the company’s contract. Employers are also required under the Act to judge handicapped applicants against the job to be performed, not against a general standard. If the applicant cannot perform the required duties, the employer must try to make a “reasonable accommodation,” to alter the work setting or change access to the work site, etc. The appli- cant can be denied the job only if a reasonable accommodation is impossible.’ Many states also have laws prohibiting employ- ment discrimination against cancer patients, again generally classifying them with the dis- abled. In New York, such discrimination is pro- hibited under the Memorandum of Law 576. In California, a bill was passed in 1975 to prohibit discrimination on the basis of a medical condi- tion. A medical condition has been defined in part as ‘“‘any health impairment related to or associated with a diagnosis of cancer, for which a person has been rehabilitated or cured, based on competent medical evidence. ’’12 Vocational Rehabilitation offices offer many services to the cancer patient. The North Caro- lina Division of Vocational Rehabilitation Serv- ices (NCD VRS) offers cancer patients various services ranging from financial assistance for medical costs to occupational counseling. If a woman believes she has been subjected to discrimination because of her history of breast cancer, she can seek information and assistance from a number of sources. If she is a member of a labor union, she can contact her union the Equal Employment Opportunities Commis- representative. Her local representative in the sion, the National Labor Relations Board, and state legislature, as well as her U.S. Senator and the American Civil Liberties Union also should Representative, may be able to advise her on be contacted to provide information, legal ad- actions she can take. Regional or national offices vice, and assistance. of the Rehabilitation Services Administration, 52 The Impact of Breast Cancer on the Public, Patients, and Health Professionals General Attitudes he emotional and social problems that accompany breast cancer are part of the disease that must be treated as seriously as its medical aspects. In the words of a nurse who had breast cancer, “To save a woman by surgi- cal intervention and then deny her the emotional support necessary to form a different lifestyle and accept an altered body image is a contra- diction in terms.”’'16 Numerous psychological studies of breast cancer patients exist, although they tend to be fragment- ed and inconclusive. Inability to draw firm conclu- sions or to report hard facts in the field of psy- chological adjustments currently results in an amorphous body of knowledge. Some general- izations can be made and some trends indicated, but they cannot be applied to all patients, and the reader should keep this in mind. Many studies currently underway have been designed to provide what is hoped to be the more defini- tive data. + Certain issues, however, are relatively common to all stages of breast cancer and interact with a woman's psychological makeup and social char- acteristics to influence her adjustment to her disease, her mental health, her compliance with treatment, and her physical well-being. How these factors interrelate and how they are per- ceived vary. But their presence cannot be under- estimated, especially if the “whole person” is to be treated for breast cancer. ~~ A woman'’s first suspicion of a breast abnorm- ality arouses deep fears — of cancer, of breast loss, of death, and of the unknown — that often continue throughout the disease process. After breast cancer has been diagnosed, feelings of guilt and anger may accompany these fears. Some patients feel they are being punished for something they may have done in the past, while others react to the diagnosis with anger and hostility toward medical professionals. To cope with their fears and anxieties, some patients deny that they have cancer. FEAR OF CANCER AND DYING Most people associate cancer with death and pain. Several studies have indicated that more people fear death by cancer than death by heart disease, although almost twice as many Ameri- cans die each year of heart disease. For exam- ple, in a 1976 study of Californians’ attitudes toward cancer, 64 percent of those surveyed mentioned cancer first as the serious illness which worried them most; only 16 percent mentioned heart disease first.!3 This fear of cancer, or cancerphobia, exists because dying of cancer is believed to be slow, painful, and unpleasant, and understandably so. The public is aware of this in part because the news media have kept the issue of cancer before the public for a number of years. Many people view cancer as invariably fatal, and believe noth- ing can be done to prevent death once cancer has developed. The cancer cases of public fig- ures have been followed in detail, and reports on cancer-causing chemicals and groups of peo- ple at high risk to cancer frequently are featured prominently in both broadcast and print news coverage. Public information campaigns by national health organizations also have increased cancer awareness. Because about 1 in 4 Americans can be expected to develop cancer sometime in his or her life, many people have had an intimate asso- ciation with someone who has had cancer or who has died of it, and fear is linked with this asso- ciation. Fears of death from cancer, however, are not limited to those with a friend or family who have died as a result of the disease. Although it appears that the general popula- tion views cancer as a death sentence, cancer patients may learn to regard it as a chronic dis- (© ease that can be treated and controlled. In reality, cancer can be either more or less trauma- tic than the often-exaggerated fears associated with the disease. Each cancer patient’s fears vary in complexity and intensity; self-preservation is not a patient’s primary concern in every case. A diagnosis of breast cancer can trigger enormous fears in a woman — fears of the consequences of the dis- ease and its treatment, what kind of life she now may have, and the way in which she may die. The patient is afraid of suffering, of short-term and long-term disability, of burdening her family with her illness and dying, and of the inability of family members to function without her.?! It is difficult to assess whether fear of cancer (and dying painfully) or fear of death is the greater trauma, because these fears are inter- twined so closely. Fear of cancer and dying fig- ured prominently in a study of the emotional reactions of 450 women with breast lumps ad- mitted to a British hospital. The study’s author pointed out two major hurdles faced by post- mastectomy women: that they had been de- prived of a part of their body that was important to their self-image, and the constant reminder that ‘‘they have had and may still have a poten- tially fatal disease.””!6! In 1973 the American Cancer Society com- missioned the Gallup Organization to measure women’s attitudes toward breast cancer. When asked to name the most serious health problem women face, 44 percent mentioned cancer first with an additional 13 percent referring specifi- cally to breast cancer. The survey found that fear of cancer tended to be greater than fear of breast loss. When survey respondents were asked whether cancer or breast loss would be the greater worry after breast removal, 59 percent felt it would be cancer and 23 percent felt it would be the loss of a breast.’® Because the women involved in the poll were asymptomatic, their projected concerns may be indicative of the anxieties about breast cancer faced by women generally. Therefore, it is important to remem- ber that many asymptomatic women may have concerns about breast cancer that can be ad- dressed and clarified by health professionals. Discussions about breast cancer between a wom- an and her physician may prove to be supportive and can reduce her anxiety. Such discussions should encourage her to watch for breast changes and to seek early treatment if she later discovers a breast abnormality. 56 Women who are at high risk to cancer, have benign cystic disease, or repeatedly discover lumps may worry constantly about breast can- cer and may feel that it is only a matter of time before they are diagnosed with the disease. These fears and anxieties may be reduced if the wom- an’s physician encourages her to have her breasts examined frequently, every 6 months perhaps, to reassure her that the lumps she feels are not cancerous. FEAR OF BREAST LOSS The type and degree of anxiety that fear of breast loss arouses in a woman depend on the culture in which she lives, her value system, and the role her breasts play in her self-image. One medical social worker has observed that future anthropologists might describe the 1960’s and 1970’s in America as the “Mammarian Age.”’?%* As a society, we place a high value on breasts. The evidence is everywhere — advertising, styles of clothing, and both men’s and women’s mag- azines. Margaret Mead’s study of various cul- tures led her to conclude that breasts are so idealized in the United States that they are the primary source of female identity.'”® Many women believe that the size and shape of their breasts determine their sexual desirability (or lack of it) and define their acceptability as wom- en in society’s eyes. If a woman accepts the role that society has created for her and if she has been conditioned since childhood to measure her worth in physi- cal terms, the loss of a breast threatens a very fundamental component of her identity. Her femininity, her self-image, and her measure of herself as a person are all threatened, especially if her breasts are perceived as a significant com- ponent of her identity or are crucial to her functioning comfortably in her career. A model, a dancer, or a professional athlete, for example, may be more severely threatened by potential breast loss than a woman whose career is not based on physical beauty or athletic ability. The amputation or loss of any external body part is traumatic and can produce a radical change in appearance. The threat of breast loss elicits an emotional reaction that plays a consider- able role in a woman’s physical well-being, and must be taken into account when the health professional considers the treatment and manage- ment of breast cancer. Psychological support for the mastectomy patient is an integral com- ponent of comprehensive care and should be in- A woman’s first suspicion of a breast abnormality usually arouses deep fears — of cancer, of breast loss, of death, and of the unknown. cluded as one of several vital rehabilitation services. To many women, breasts also are equated with motherhood, both literally and symbolic- ally. Whether a woman breast feeds, contem- plates breast feeding, or indeed has ever borne children, a symbolic connection exists between the breast and motherhood. Recent social trends may help ameliorate society’s traditional emphasis on breasts as among a woman’s most valuable attributes. The women’s movement, consciousness-raising, and the dramatic increase in the number of working and career women all are contributing to the development of a different concept of womanhood from that defined in the 1950’. It is still unknown whether the precepts of equality for women and evaluation of a woman’s worth based on attributes other than physique ever will be totally integrated into our thinking. But signs point to a cultural climate that places less emphasis on a woman’s body and gives a woman more control over her reproductive life and health care. This may help reduce the emotional trauma that accompanies breast loss, while simultaneously increasing women’s sense of responsibility for their personal health and well-being. ANGER, GUILT, AND DENIAL At one time or another many women who have breast cancer experience some feelings of anger, guilt, and denial. Anger may begin as a sense of in- justice (“Why me?”’) and may be followed by hostility toward the medical profession for failing to find a cure for breast cancer. The patient’s anger may be expressed as verbal attacks on such nearby targets as the surgeon, nurse, social worker, psychologist, or members of the woman's family. 58 If health professionals and family members under- stand the reason for this behavior, they can en- courage the patient to explore the pain and fear underlying her anger and thus begin to deal with her anxiety in a more open and effective manner. Feelings of guilt may arise from a patient’s con- viction that she is being punished for past thoughts or actions. For example, some women may believe that breast cancer is their punishment for masturbation or premarital sex. Breast cancer patients with daughters may feel guilty out of fear that they may have passed on the “bad seed” of breast cancer.!38 Denial can be a positive means of coping in the initial stages of a woman’s adjustment to a diag- nosis of cancer. Some women are so overwhelmed by the news that they have breast cancer that they are unable to deal with any of the aspects of their diagnosis. For these women, denial can serve as an emotional anesthetic; as the threat is reduced, patients gradually can begin to absorb and deal with the reality of their situations until they feel strong enough to face all the problems and challenges the disease and treatment poses. Nevertheless, denial may have serious and even tragic consequences if it dominates the patient. Denial of a suspicious lump may result in a lengthy delay before seeking diagnosis of breast cancer symptoms, and denial of cancer once it has been diagnosed might cause a patient to delay or even refuse surgery, or to seek quack treatments. When a breast cancer patient consistently denies that she has cancer even after surgery, her denial may pro- long or even prevent her adjustment and rehabili- tation process, and may place a tremendous strain on her emotional stability and family relations. Although denial is rarely carried to its extreme, it can and has resulted in total refusal to seek treat- ment and almost certain death. Detection— Attitudes and Practices t has been estimated that more than 90 percent of all palpable breast tumors are discovered by women themselves.!! This includes lumps that may have been found by the woman herself, her husband, or lover. Several studies have been conducted on the psy- chological and sociological aspects of breast cancer detection. Most focus on two questions: Why are so many women reluctant to examine their breasts? Why do women delay in seeking treat- ment once they have discovered possible symp- toms of breast cancer? AVOIDANCE OF BREAST SELF- EXAMINATION Despite the amount of information on and public- ity devoted to breast self-examination (BSE), few women practice it regularly. The results of a 1973 survey of 1,007 women sponsored by the Ameri- can Cancer Society (ACS) indicated that 77 per- cent of adult women had heard of breast self- examination, but only 18 percent said they had practiced it monthly during the previous year.%® A follow-up study conducted in December 1976 indicated that 24 percent of women said they practiced BSE monthly.®’ LACK OF KNOWLEDGE AND CONFIDENCE Women neglect to examine themselves for a num- ber of reasons. Three cited in 1973 ACS survey were ® ignorance of the importance or function of frequent examinations e insufficient knowledge of self-examination methods ® a lack of confidence in the ability to conduct BSE? Only 12 percent of the women surveyed were aware that BSE should be done monthly. More than one-third of the women who had heard of BSE did not practice it because they mistakenly 59 believed that having a doctor examine their breasts periodically was sufficient.?® Although it seems impressive that 77 percent of the women surveyed were aware of BSE, aware- ness for many did not encompass any knowledge of how to practice self-examination. Fifty-three percent did not know that one should assume any specific position, and 32 percent did not know what possible signs of breast cancer to look for.%® Another problem is a lack of confidence. Only 22 percent of the women who had ever practiced self-examination felt they were sure what they were doing, and only 35 percent were sure they would know what a lump would feel like. Because lack of confidence seems to deter women from practicing BSE, more health education on a per- sonal level by physicians and nurses, stressing BSE’s importance and demonstrating the proced- ure for their patients and their partners, may help increase BSE practice. Ninety-two percent of the women surveyed who had received personal in- struction in BSE had practiced self-examination during the previous year.?® Health program planners and administrators can make a valuable contribution to breast cancer in- formation and education efforts by developing and implementing both small--and large-scale per- sonal BSE instruction programs in schools, hos- pitals, clinics, and physicians’ offices. The National Cancer Institute has recently funded a pilot program using nurses to instruct hospitalized women in breast self-examination, based on refinements of several such programs around the country. The program will be evalu- ated carefully to determine if this method of instruction increases the women’s practice of BSE. FEAR, DENIAL, AND FATALISM Even among those women questioned in the ACS survey who felt confident doing breast self-ex- amination, only 52 percent had done BSE month- ly during the previous year. Some women’s reluc- tance to examine themselves appears to be con- nected with sexual and cultural taboos. They may not examine themselves because they are em- barrassed or believe that it is wrong or even sinful to touch their own breasts. Fear and anxiety were mentioned specifically in the ACS survey report as reasons women do not examine themselves. Of the women surveyed 46 percent felt that monthly examination would make them worry unnecessarily. Forty-seven percent of the aware non-practicers gave reasons for not doing BSE that were related to avoidance (denial): “Neglect,” ‘“‘should have, but haven’t taken the time,” and “don’t feel I have a need {orien The fear of discovering an abnormality that may be breast cancer is so overwhelming for some women that they avoid practicing BSE. If they don’t examine themselves, there will be no symptoms, they reason subconsciously, therefore mutilation and possible death will not occur. Many people have the attitude that cancer only happens to other people. And, those with a fatal- istic attitude believe that nothing, including breast self-examination, will prevent the development of the disease. Because the causes of breast cancer are unknown, this sense of fatalism is not irra- tional. Although self-examination cannot prevent breast cancer, it may detect it early enough to be treated effectively, thereby delaying death. If women are reminded that 8 out of 10 breast lumps are not cancer, that early detection of breast cancer may mean less extensive surgery and control of the disease, and that breast recon- struction is possible, some of these fears may be reduced and women may seek treatment earlier. Although some breast lumps undoubtedly are discovered by the women’s partner, husbands and lovers have been largely ignored as sources of examination assistance and encouragement for women who are reluctant to examine their breasts. Women’s partners can be included in per- sonal BSE instruction programs so that they can learn proper techniques and can share the respon- sibility for regular breast examinations. If partners share the responsibility and practice of BSE, much anxiety about the examination and breast cancer may be reduced. Much more research needs to be conducted on the psychological variables that influence women’s avoidance of breast self-examination. Studies are 60 needed to document what subconscious factors influence a woman’s emotional response to in- formation about breast cancer and to suggestions concerning detection practices. Knowledge of how these responses interact with personality characteristics is crucial to the development of public information and educational strategies that can be used to encourage early detection, diag- nosis, and treatment of breast cancer. DELAY IN SEEKING TREATMENT The reasons some women delay seeking medical advice once they have discovered symptoms of possible breast cancer are of great concern to health professionals. In 1964, a study was made of a group of 150 women who were hospitalized in New York for treatment of breast cancer symp- toms. All the women had delayed seeing a doctor two months or more after discovering symptoms. The reasons most often given for delay were insensitivity to breast changes ignorance of the significance of a lump in the breast hope that the lump would disappear by “magic” temporizing [compromise] the advice of a physician inadequate financial status lack of pain fear in relation to cancer!” The study also identified the following prob- able psychological problems and personality traits that contributed to the delay in seeking treatment: fear and anxiety [repression of the fear that a lump is cancerous as well as the fear of cancer treatment itself buries the cause of the fear, re- sulting in general anxiety | false modesty and shyness [some women are embarrassed to expose their breasts to a doctor] lack of tactilism [inability to sense pleasurable feelings in the breast] narcissism indecision denial [refusal to admit anything is wrong] compulsion [a strong impulse to do something contrary to one’s better judgment] depression guilt [punishment for past deeds] !°! Another 1964 study focused on 41 women who had been referred to a New York tumor clinic for treatment of breast cancer symptoms. The women were given a series of psychological tests, some to determine their body boundary concepts (a dimen- sion of body image measuring how the individual perceives her physical limitations), and others to measure the dominance of their repressive defense system (a means of dealing with problems by re- pressing and denying them) in each individual.!!3 Contrary to the findings of other studies linking delay with avoidance, repression, and denial, these test results indicated that women with very domi- nant repressive-denial defense mechanisms did not delay longer than women with normal ego defense systems. The study also found that the more well- differentiated a woman’s body boundaries were (indicating independence, self-direction, goal- direction, and ability to deal well with difficult, stressful experiences), the more likely she was to delay seeking treatment. It was hypothesized that a woman with definite body boundaries is generally more secure about her body and less alarmed by its symptomatic alteration, and thus she feels less need to seek immediate medical attention. A very independent woman may also delay because she is threatened by the idea of dependency on her doctor, hospital staff members, and her family, the study concluded.''? In this study, the subjective reasons for patient delay were not sought directly either from the women themselves or from their medical records. Such information, however, is crucial to an under- standing of the relationship between a woman’s psychological defense mechanisms and her ulti- mate behavior. In 1974, researchers interviewed and tested 125 patients who had breast cancer, lung cancer, colon cancer, Hodgkin’s disease, and malignant melano- ma. Results of the study showed that of the patients who had delayed seeking treatment, the breast cancer patients had cancer at a more ad- vanced stage at the time of diagnosis. The breast cancer patients who had delayed seeking treat- ment were generally less satisfied with the infor- mation given by the doctor and were more tense, 61 angry, tired, and confused than were the other cancer patients. In most cases, these breast cancer patients were older women who lived alone with no one to depend upon, and therefore were very fearful of an extended illness.?%% Certain psychological characteristics were linked with delay, regardless of the type of cancer. These included more denial, a stronger belief that the condition was not serious, more marital prob- lems, more reports of isolation from and rejection by family, and a greater sense of powerlessness. Such preliminary findings reveal the need for counseling prior to treatment in order to reduce the patient’s confusion, anxiety, feelings of isola- tion, and sense of helplessness.??% Factors beyond a woman’s conscious awareness or control, such as avoidance defenses and depres- sion, are also among the most important determi- nants of delay. Some researchers recommend that health educators place more emphasis on the role of doctors in screening women at risk to breast cancer, particularly those who seem to have an indifferent attitude toward breast symptoms or those who are prone to depression.?58 One psychologist believes that knowledge of the potential for breast reconstruction may moti- vate women to seek early treatment of breast cancer symptoms.?3? Understanding that breast reconstruction may be possible can reduce wo- men’s fears about breast cancer treatment if they know that mastectomy may not be the final step in the treatment of their disease. Efforts have been undertaken by local and national health organizations to combat women’s fears of breast cancer by educating them about the trend toward less radical surgery and recon- struction opportunities, encouraging them to practice breast self-examination, and urging them to seek early diagnosis and treatment of breast abnormalities. (See Information and Education Programs.) Coping with Diagnosis he process of diagnosing breast cancer is de- tailed and time consuming. The period of days or weeks between finding a breast cancer symptom and receiving the results of a biopsy to determine whether the lump is cancer can be an agonizing time for a woman. After she discovers a breast abnormality, the woman must arrange to see her physician for a breast examination. If her physi- cian feels that further tests are warranted, an ap- pointment will be made for the woman to have a mammogram at a hospital or diagnostic facility. If test results show that the woman’s symptoms are indicative of breast cancer, she will be admit- ted to a hospital for a biopsy. If the biopsy is to be performed under general anesthesia and if the woman has consented to undergo biopsy and possibly mastectomy in one operation, there will be no further waiting or decision-making period between biopsy, confirma- tion of test results, and surgical treatment. But if surgeon and patient have agreed upon a two-step procedure, a period of several hours or days may elapse between biopsy, confirmation of test re- sults, and treatment. Thus, from the time a woman first discovers a breast abnormality until she knows the result of biopsy, several weeks may have passed. For many women, waiting for a possible diagnosis of breast cancer is a traumatic experience. Fears of cancer, breast loss, and death can be overwhelming during this period. THE ONE-STEP PROCEDURE A patient’s reaction and adjustment to the diagno- sis of breast cancer are sometimes dependent on the timing of biopsy and surgery. In some cases it may be medically necessary to perform a one-step (or one-stage) biopsy /mastectomy because of a woman's general health or the possibility of an ad- verse reaction to anesthesia. In addition, many American surgeons prefer to perform one-step procedures. Virtually all hospitals require that patients who are to undergo surgery sign a form consenting to the procedure. Therefore, when biopsy and mas- tectomy are to be performed in one step, the pa- tient’s consent for a mastectomy is required be- fore she even knows whether she has cancer. A woman’s emotional trauma may be increased by a one-step procedure because the decision to per- form a mastectomy is made while she is still under anesthesia. Some women, however, prefer biopsy and mastectomy in one step because they feel this lessens the anxiety of anticipating additional sur- gery. Women who have clinical evidence of cancer often want to get all surgery over with as soon as possible and may suffer emotionally during the waiting period between biopsy and mastectomy. In a one-step procedure, tests to determine the extent of the disease throughout the body (stag- ing) can be performed prior to treatment if clini- cal evidence strongly suggests cancer. If staging is not done prior to mastectomy, it can be done afterward. However, if the disease has spread be- yond the breast, mastectomy may not be the best primary treatment. In the 1973 American Cancer Society survey, asymptomatic women were asked which of three procedures they would want their own physicians to use if undergoing a breast biopsy. Twenty per- cent replied they would want to consult with another doctor if their physician recommended breast removal, 28 percent said they would want a post-diagnostic discussion and then return to surgery, and 47 percent said they would prefer signing a prior consent agreement. Major reasons given by the prior consent group were fear of surgery and cancer (“get it over with’’) and confi- dence in their physicians (“doctor knows best’’).%8 THE TWO-STEP PROCEDURE Use of the two-step (or two-stage) surgical pro- cedure, in which there is an interval between biopsy and mastectomy, provides time after biopsy and prior to treatment to stage the dis- ease. The patient then has an opportunity to dis- cuss the test results with the surgeon, seek addi- tional medical advice if she wishes, decide on the appropriate treatment, settle personal matters, and begin to adjust emotionally to the idea of having a mastectomy, if this is the treatment chosen. Involvement in the decision-making process gives a woman a strong feeling of control over her body and her life. This can be a crucial factor in her attitude and her manner of coping with can- cer, both before and after surgery.>*” (See Diagnosis.) INFORMING THE PATIENT Whenever a biopsy or a mastectomy is to be per- formed, the meeting between the surgeon and the patient prior to surgery could well be the most important time they spend together. During this consultation, the foundation is established for their future relationship, and the direction is set for the patient’s postoperative attitudes. The physician’s competent management of early consulations with the patient is crucial, for if these meetings go poorly, the patient’s anxieties and hostilities can develop into mistrust of the physician. On the other hand, if the physician- patient relationship is open, communicative, and based on mutual trust and respect, both partici- pants will benefit.?! One benefit of open com- munication is that informed patients have more confidence in their physicians?!® and thus may be more cooperative and positive. Honesty is encouraged in dealing with cancer patients. Most patients indicate that they want to be told the truth, since truth is easier to cope with than uncertainty and the unknown. Because of the numerous myths about cancer, a woman'’s fantasies about the disease and its treatment are often far more devastating than the facts.!?! Vague descriptions of the disease followed by at- tempts at reassurance may only confuse and frighten the patient. She may interpret the phy- sician’s vagueness as an attempt to avoid a discus- sion of death. If accurate information is given and is accompanied by frank discussion, the patient often begins to accept and to work out her anxie- ties, instead of being paralyzed by her own fears.’ Many physicians frankly tell their patients that they will need surgery if breast cancer is found. They take the time to explain the details of the 63 disease and the various treatment options avail- able, even if some of the alternatives are not rec- ommended. They even may suggest that the wo- man seek a second opinion. Others think the physician should not thrust details upon a patient who does not want to hear. They argue that discussing the possibility of radical surgery, other modes of treatment, and the degree of incapaci- tation the patient might experience can frighten some women into refusing treatment. Because each patient’s response to a diagnosis of cancer is different, the physician must decide how much to tell her based on knowledge of her emotional and psychological makeup.?'® A wo- man’s reaction to diagnosis depends on interac- tions of her personality (i.e., whether she is an information seeker or avoider), her intelligence, her experiences with cancer, her anxiety level, her belief in the value of medical care, and the con- tent and manner in which facts are presented to her. More research is needed to examine this intri- cate interaction of variables so that it will be pos- sible to predict with some certainty which women will benefit from detailed information about breast cancer and which will resist it or be alarmed by it. Ideally, in discussing treatment procedures and the patient’s prognosis, the physician tries to reach middle ground between being obscure and forcing the patient to confront more information than she can deal with at one time.?°? In stressful situa- tions, patients may hear but may not understand all the information given, and it will be necessary for the physician to repeat much of it later. Selec- tive hearing (subconsciously choosing to hear and retain only what one wants to hear) frequently oc- curs when a person is under stress and can trigger psychological problems. This type of denial usually takes the form of the patient asking the same questions over and over or repeating only that part of the information she chooses to hear.?%* Some health professionals have helped patients overcome these problems by giving them written information, phonograph records, or cassette tapes to take home so they can assimilate the information gradually when they feel more ready to cope with the facts about their condition. In addition, some physicians urge the patient to ask a supportive person such as her partner or a close friend to accompany her to the consultation. This person can absorb most of the information given by the physician and later can talk with the patient to determine if she has blocked out any The physician’s task — conveying a diagnosis of a potentially fatal disease and explaining methods of treatment while providing warmth, hope, and continuing emotional support — is not an easy one. part of the discussion. The physician can then be told of the situation and can schedule an addi- tional meeting with the patient if necessary for the patient’s emotional well-being. Nurses and other health professionals who come in contact with the patient after diagnosis and before treat- ment begins can also try to discern whether she is avoiding facing her diagnosis. They can also inform the physician so that any points the patient has misunderstood can be clarified and diagnostic information can be restated. When a patient’s partner does not attend the consultation, many physicians arrange to see the patient’s husband, or another person close to the patient. During this meeting (which may include the patient, depending on her wishes and her emotional strength) surgical decisions and the relative consequences are described, the patient’s prognosis is explained, and the husband is en- couraged to ask questions,??’ and explore his own reaction to his wife’s possible breast loss and to cancer generally. The health professional also can help the patient and her husband consider how and what to tell other people, especially their own children, about the diagnosis and the surgery the woman will undergo.!3! HELPING THE PATIENT COPE The manner in which information is given to the patient is just as important as the content. The physician’s task is not an easy one; he or she must convey a diagnosis of a potentially fatal disease and explain methods of treatment, other choices available to the patient, and the possible conse- quences if she refuses treatment. At the same time, the physician must try to provide warmth, hope, and continuing emotional support. Physicians who are unable or unwilling to take the time to help the patient deal with her emo- tional problems may rely on other medical and 65 mental health professionals (nurses and nurses’ aides, social workers, physicians’ assistants, psy- chiatrists and psychologists) for their help in sup- porting the patient and providing her with infor- mation on other resource and support groups. An example of this kind of assistance is NURSUPPORT, a voluntary organization of nurses in Washington, D.C. The group provides prediagnostic counseling, information on treat- ment, and emotional support to women with symptoms of breast cancer and to women who already have been diagnosed as having the dis- ease. NURSUPPORT also provides women with expert medical guidance, assistance in selecting an appropriate physician and in scheduling ap- pointments, and emotional support and medical information throughout the entire disease process. Other health professionals can be of great value, even if they are not directed specifically to pro- vide assistance to the patient. In discussions with such health professionals, the patient should be urged to express her fears about cancer and how the disease may affect her goals, ambitions, and self-concept. It is important to encourage tears, for crying can help the patient release some of her tensions and come to terms with her feelings.!3! Together, the patient and the health professional can work to overcome some of the fears, anxi- eties, and other emotional problems they both have identified. Discussions also can help the patient prepare for possible breast loss and begin the grieving which often follows mastectomy.?%* During the period between breast cancer de- tection and the beginning of treatment, it is im- | portant for health professionals to recognize tha each patient’s needs are different. If each patien is approached as an individual, health care pro- viders can decide what kind of information, con- sideration, and treatment she needs to cope more effectively with her illness. Coping With Treatment woman's psychological adjustment to the treatment of breast cancer depends to a large degree on her previous attitudes toward hospital- ization and medical practices in general, and on the specific treatment methods involved. HOSPITALIZATION Most women probably have been hospitalized for childbirth or minor surgery, and have made num- erous trips to hospitals to visit relatives, children, and friends. Nevertheless, women who previously have had unhappy experiences with hospitals or with cancer, whether their own illness or that of a close friend or family member, understandably will have negative feelings about being hospitalized for cancer treatment. Women’s responses to hospitalization vary con- siderably. Merely being in a hospital is frightening to some women, and uncertainty over the outcome of surgery adds to this fear. Others are reassured by hospital admission and relieved to be in the hands of medical professionals. Patients’ reactions to hospital admission also de- pend on their anxiety about the effect their hos- pitalization will have on their families and careers. Arrangements for child care, financial worries, and job adjustments can be major problems, especially if the patient is self-supporting or the head of the household.!®! In addition, the manner in which a woman has coped with previous stresses or crises will determine to some extent how she deals with her hospitalization and surgery for breast cancer. For example, if she has never discussed her emo- tions or personal problems in the past, it is unreal- istic to expect that she will do so during or after her hospitalization for a mastectomy. Hospital procedures disturb some patients. An- ticipated anesthesia, for example, is not threaten- ing to some women but raises fear among others. Patients who want to escape disturbing hospital sights and sounds and avoid any traumatic re- 66 minders of the operation they are about to under- go often request to have anesthesia administered in their rooms. If possible, this procedure spares the patient further anxiety in an already unpleas- ant situation.?! On the other hand, some women fear they may never awake from the anesthesia. This is related to a fear of losing control or a fear of death. Such patients need considerable reassurance and sup- port, particularly from the medical staff.?5° A patient’s anxiety about anesthesia and sur- gery may manifest itself in physical symptoms such as insomnia, headaches, nausea, vomiting, diarrhea, increased heart rate, or diffuse aches and pains. In addition, some patients often report vivid dreams and nightmares that mirror their emotional states. Physicians, nurses, and family members can watch for these symptoms and encourage the patient to talk about her fears. A woman’s anxieties may be alleviated if she is assured of other people’s sympathy, understanding, and commitment to her medical care, and any ex- aggerated fears she has may be reduced by open and supportive discussions about hospital pro- cedures and treatment methods. COMMUNICATION Hospital admission and the time awaiting biopsy or biopsy-possible mastectomy occasionally pre- sent such physiological and psychological changes and intense anguish in a patient that the physician may want to arrange for psychiatric help to expe- dite surgery. It is vital that patients communicate frequently with physicians, nurses, social workers, and other members of the health care team. Many patients complain of inadequate information and of insuf- ficient time to ask questions. As discussed earlier, when biopsy and mastectomy are performed in two stages, the shock of diagnosis may have caused the patient to block out much of the in- formation given her by the physician at that time. She may need her physician to spend time with her before her mastectomy so that medical details of her diagnosis can be repeated. Because the pa- tient has had time to think about the general in- formation she was given at the time of diagnosis, she may have many more specific questions about her cancer, surgery, and rehabilitation. Such ques- tions should be encouraged. The patient’s emotional needs, both before and after mastectomy, are just as important as her de- sire for medical information. Psychiatrists and psychologists generally think that physicians, nurses, and other members of the health care team can make an important contribution to the patient’s total adjustment process by continually encouraging expression of feelings and fears. Some women do not discuss their feelings with a surgeon or nurse because they are afraid of being thought silly or do not want to take up valuable time with non-medical questions or com- plaints. Many patients feel more at ease when they discuss their feelings with physicians’ assistants, nurses’ aides, social workers and other hospital employees. These members of the health care team can help the patient talk about her fears and anxieties and how her mastectomy may affect her husband’s feelings, her relationships with her family and friends, the clothing she may wear, and her plans for future activities. Many patients mistakenly believe that stoic, silent bravery is the only acceptable mode of be- havior for a cancer patient. Physicians, nurses, social workers, and other health professionals can help the patient realize that, to fight cancer and cope effectively with the disease, she needs to identify her emotional problems and discuss them freely. If stoicism is encouraged either directly or indirectly by hospital staff and family, many pa- tients, in attempting to meet these expectations, repress their feelings and thus endanger their chances of emotional rehabilitation. It cannot be emphasized too much that each woman will react to her own diagnosis in her own way; therefore each person must be cared for individually. For the otherwise stoic woman who allows emotional release, accepting her own display of emotions may be a greater problem than anything else. Although it is important that the patient be comforted and reassured, she should not be given false assurances from medical staff members that “everything will be all right.”” She should be told about the side effects and degree of incapacita- 67 tion that can be expected from mastectomy and other treatments, and she should be given infor- mation on the time required for rehabilitation and the components of follow-up care. She should know that depression is normal for some time following surgery. This depression may not occur until several months after surgery, or may dis- appear and then recur from time to time. Confronting and resolving the emotional con- flicts associated with breast cancer and its treat- ment require a great amount of both psychologi- cal and physical strength. If the patient continues to deny the existence of cancer or her breast loss, or if she continues to repress her fears and emo- tions, she wastes emotional and physical energy that could be used to fight the disease. The desire to fight cancer can provide a vital boost to the prescribed medical treatment. ADJUSTING TO MASTECTOMY Rehabilitation after mastectomy includes regain- ing physical strength, returning to presurgical ac- tivities, and coping with the emotional problems associated with the loss of a breast and having a serious disease. Many health professionals believe that the proc- ess of rehabilitation should begin when a woman first sees her physician for breast cancer symp- toms. Others believe it cannot begin until the phy- sician determines that a biopsy is necessary and explains to the patient what she might expect. By trying to dispel her fears during the time before there is a definite diagnosis, the physician may prevent these anxieties from developing into emo- tional problems after surgery.!3! The degree of honesty, the amount of infor- mation provided, sympathy, and respect for the patient shown by her physician before surgery strongly influence how a woman copes with breast cancer after surgery and adjunctive treatment. Pre- surgical counseling and patient involvement in the decision-making process can make a difference in the speed of complete emotional rehabilitation achieved by the patient.!3® It must be reiterated, however, that the manner in which a woman copes with breast cancer de- pends to a large degree on how she has coped with past problems. If she has never been able to/discuss her emotions freely and deal with them construc- tively, it is unlikely that she will do so before or after her mastectomy. DENIAL, FEAR, AND ANXIETY Immediately after surgery, the crisis of ma tomy assumes reality as the patient faces two major emotional problems: the fear of cancer and possible death, and adjusting to the loss of her breast.?!® Some patients cannot deal with complete real- ity immediately following surgery. For these pa- tients, denial of cancer and of breast loss may be a necessary and immediate defense that provides some time to adjust. However, to cope effectively, women must soon acknowledge both the diagno- sis of cancer and the mastectomy. Fear is both a part of denial and a reason the patient denies that she has cancer. Fears of death, dying, pain, suf- fering, living with constant uncertainty, becoming a burden on others, losing sexual attractiveness, and losing independence all may contribute to a cancer patient’s fear of a suddenly unpredictable future. A patient may manifest denial by eliminating the word “cancer” from her vocabulary, substi- tuting the unpleasant truth with euphemisms such as “it,” “tumor,” “lump,” and “disease.” Patients may also speak in the past tense (‘I had cancer’’). Some patients admit a conscious deci- sion to ignore diagnosis by refusing to discuss their condition. If she believes that some people will abandon her because she has cancer, a patient may deny having the disease to prevent losing a friend. This may explain why some patients deny the existence of cancer to people close to them, while speaking freely of their condition to casual acquaintances. Patients also face fears of further physical in- jury to the chest and the possibility of complica- tions resulting from surgery. A woman may avoid crowds or housework because she is worried that she might injure the breast area. She also may worry that her remaining breast is vulnerable to infection or disease. If it becomes extreme, the woman's “Don’t touch me or you’ll hurt my breast’ attitude could contribute to marital prob- lems and a self-fulfilling prophesy of being re- jected by her partner. A patient’s feelings of anxiety — shame, hostil- ity and guilt —sometimes are combined with fear and denial after surgery and can result in emotion- al withdrawal and avoidance of physical contact. Age and marital status also have been observed as important factors to adjustment. Another study evaluating patients in a breast cancer rehabilita- tion group indicated that emotional stress may be related to age, as the average age of the patients experiencing no or minimal stress was lower than that of patients who felt moderate or severe stress. 287 68 However, health professionals disagree on whether younger or older women have a more dif- ficult time adjusting to mastectomy. Certainly many of the problems experienced by a young, single patient differ from those faced by a middle- aged patient with a husband and children or an elderly woman living alone. Therefore, the effects of stress on various age groups cannot be general- ized. Each breast cancer patient must be viewed as an individual whose response to mastectomy depends on a number of variables in her lifestyle, including the activities and goals that she feels are threatened by her disease or breast loss. ANGER Anger, combined with shock, is another response to mastectomy. Some women express a sense of unfairness, injustice and disbelief by asking “Why me?”’ Others express hostility toward both medi- cal researchers for their failure to find a cure for cancer and those closest and easiest to strike at: the hospital staff, family, and friends.?!® If a one- step biopsy and mastectomy procedure has been performed and if for some reason the woman did not understand she would undergo mastectomy if cancer were present, she may feel she has been deceived by the surgeon when she awakens from anesthesia and discovers that her breast has been removed. Frustrated and angered at the lack of control over her body, the woman who has under- gone a one-step surgical procedure may feel that the mastectomy was a personal attack and an insult to her femininity and physical well-being, as well as a confirmation of her helplessness. Anger and resentment can be positive, healthy ways of expressing feelings about surgery, as long as they are not extreme.?! By encouraging her to verbalize her anger and hostility, the patient’s doctor or another member of the health care team can help her begin to deal with her anger, understand and accept the reasons for the timing of the surgical procedure she has undergone, and turn her thoughts toward recovery and rehabilitation. CONCEPT OF BODY IMAGE How a patient copes with a mastectomy usually depends on how she adapts to other physical changes that affect her body image, and the way she appears to herself. A woman’s body move- ments, posture, athletic ability or physical dex- terity, and familiarity with and acceptance of her body’s parts all contribute to her body image. The extent of the damage to her body caused by a mastectomy and its effect on her own body image depend in part on the emotional importance a woman places on her breasts. As detailed earlier in this chapter, many women’s feelings of self- esteem, desirability, and sexuality are closely tied to their breasts. Although amputation of any body part is traumatic, the woman who believes that her breasts represent her femininity and pri- mary source of self-worth is often depressed more severely after mastectomy than the woman whose self-esteem is based on other attributes such as achievement, intelligence, personality, or athletic ability.?3® A discussion with her physician prior to mas- tectomy about prostheses and the possibility of breast reconstruction can help such a patient turn her thoughts more quickly toward rehabilitation and resuming a normal life.2'® The routine task of changing the dressing on the mastectomy wound may be a good time for the patient to begin to ac- cept her new body image. By helping the patient view the wound or by gently exploring it with the patient’s hand, the nurse also can explain the ex- tent of the operation and the reasons for any pain or tightness the patient may feel. GRIEVING AND DEPRESSION To some patients, loss of a body part is very similar to the death or loss of a significant person. Just as a mourning process is necessary in learning to live without a loved one, grieving is appropriate when a breast is removed. Unresolved or only partially-resolved past losses may be reactivated during this mourning process, thus intensifying sorrow and grief.?"? Depression is normal for some time following surgery for some patients. It may not occur until several months after surgery, or may recur from time to time. The patient may be adjusting well to her mastectomy until some experience — shop- ping for a bathing suit, for example — brings on a brief period of depression. The level or even presence of depression de- pends on the patient’s age, marital status, history of previous depression, ability to deal construc- tively with stress, and degree of satisfaction with the kind of information given by her physician upon diagnosis. One study found that mastectomy patients’ peak depression occurred 2 to 3 months after surgery, a finding the researchers feel may be influenced by the type of treatment the patients received as well as their return to normal responsibilities. The study found that only 20 per- cent of breast cancer patients reported the syn- drome of depression, lowered self-esteem, in- 69 creased health concerns, and loss of energy.?%* Some depressed women may even contemplate suicide after mastectomy. In one study, 41 breast cancer patients were questioned about their feel- ings both prior to and following mastectomy. Ten of the women indicated they had seriously con- sidered suicide. One factor distinguished these women from the others in the study — they all had high sexual interest and activity prior to mas- tectomy. These women also had the highest in- terest in reconstructive surgery.?%® Breast cancer patients may sometimes appear excessively cheerful and elated a week after suf- fering severe depression. Elation, usually charac- terized by overactivity, loquaciousness, and cheer- fulness, may be ‘a fragile mask for a serious de- pression,’’?! yet sometimes is ignored as a symp- tom of distress. Health professionals and family members can watch the patient closely, and if such symptoms appear, they can encourage her to seek help in overcoming her depression or can arrange for her to talk to a psychologist or psychiatrist. DEPENDENCY AND NEED FOR SUPPORT The patient may become more dependent on nurses, family, and friends than she was before surgery. Several researchers interpret this new de- pendence as a “cry for support” in the early days after surgery. The woman should not be forced to break her dependence immediately, for it usually is a temporary and healthy first step in restoring emotional stability after a traumatic experience.?! Some of this dependence can be reduced if, as soon as they are aware of the patient’s prognosis, nurses or social workers assist the patient in caring for herself and help her re-establish her self-image, so that the patient ultimately can regain her for- mer level of independence. For example, after mastectomy, patients need to be instructed in every aspect of their personal physical care so that they can be as independent as possible. If the nurse explains why she is doing certain procedures for the patient during regular care, the patient will have a better understanding of the kind of attention she needs and why. Some women have reported that leaving the protective environment of the hospital and re- turning home were very traumatic. As mentioned earlier, a patient may be afraid that her family and friends will react to her disease by abandoning her. Warm supporting personal and professional relationships can help quell a woman’s fears about her worth and assure her that she is a valuable person, loved for herself and not solely for her ap- pearance.?!*> Many women mistakenly believe that society expects them to accept matter-of-factly their breast loss. The family’s support can do much to aid in the woman’s adjustment. The ad- justment period may be difficult, but health pro- fessionals can help the patient and her family realize that it is a normal and healthy response to express feelings of anger, fear, loss, and anxiety. REHABILITATION GROUPS Because surgery is never a sure cure for breast cancer, the knowledge of her vulnerability and mortality may cause a woman to re-examine her lifestyle and goals after a mastectomy. A growing number of postmastectomy self-help groups around the country bring women together to dis- cuss their feelings about mastectomy, breast cancer, and any emotional problems they may have. These groups have helped mastectomy pa- tients find comfort in the knowledge that they are not alone and that their problems are easier to face when other people who have had the same surgery are supportive. In many hospitals, with the physician’s consent, a trained volunteer from the American Cancer Society’s Reach to Recovery Program will visit the patient after surgery and provide her with litera- ture and advice on exercises, prostheses, clothing, and other aspects of rehabilitation. More than 10,000 Reach to Recovery volunteers visited over 50,000 mastectomy patients in 1976. All volun- teers in this program have had mastectomies, and thus are sympathetic allies and role models of suc- cessful adjustment to breast surgery. The mere presence of the volunteer in the patient’s hospital room may reassure the patient that she is not alone in her ordeal and that rehabilitation is possi- ble. Such programs are easily established in hos- pitals around the country. At New York’s Memorial Sloan-Kettering Cancer Center, the Post-Mastectomy Rehabilita- tion Group works with breast cancer patients while they are in the hospital. The group meets for 90 minutes a day, 5 days each week, and is led daily by a team consisting of a physical ther- apist, a nurse, a social worker, and, for 3 days each week, a Reach to Recovery volunteer. The first day after surgery, the nurse usually visits the patient and tells her about the group. The patient begins to attend group meetings on the second postoperative day. Each meeting begins with arm and shoulder exercises led by the physi- cal therapist, followed by a discussion of the pa- 70 tients’ feelings about breast surgery, possible physical discomforts, and hand and arm care. This type of group combines the opportunity for the patient to learn self-care with an opportunity to verbalize her feelings about the psychological and social consequences of her breast cancer. One evening each week, a group session is of- fered for the patients and their partners to en- courage communication between them and to help the partners participate in the patients’ rehabilita- tion. The group attempts to help the couples anticipate the future by encouraging questions and discussions about children, sex, and other sub- jects of concern. A follow-up group meeting is conducted for some patients by a social worker 8 to 12 weeks after the patient’s hospital discharge to further explore the patient’s needs once she has returned to regular activities. A study evaluating the Post-Mastectomy Re- habilitation Group indicated that the interperson- al support each person received speeded rehabili- tation time and her return to normal activities.?!3 Although such a comprehensive program may be beyond the staff and financial capabilities of many small health care facilities, planners and ad- ministrators in larger hospitals can develop the same kind of support services for mastectomy patients and their partners. (See Information and Education Programs.) LIVING WITH CHEMOTHERAPY AND RADIATION THERAPY The emotional problems of adjusting to breast loss may be compounded if the patient requires additional treatment after mastectomy. Adjunc- tive treatments such as chemotherapy and radia- tion therapy interrupt the patient’s return to a normal life and can have a negative effect on her physical and emotional well-being. The medical benefits and physical and psycho- logical side effects of chemotherapy or radiation therapy sometimes are misunderstood by cancer patients. The need for such therapy may be inter- preted by patients as a sign that their condition has worsened, adding considerably to their fears of cancer, pain, dying, and death. The patient’s fear of side effects or her con- tinuing denial of cancer may result in her refusal of chemotherapy or radiation therapy. Optimistic or better-informed patients, however, feel reas- sured by the use of radiation therapy and chemo- therapy. They consider it a kind of “mopping up” after surgery to ensure that all cancerous tissue is killed. Chemotherapy. Although chemotherapy has been used for some time to treat breast cancer in its advanced stage, its use as an adjunct to surgery for primary breast cancer is still considered experi- mental. As such, few studies have examined its psychological impact on the breast cancer patient. In a recent study of 50 breast cancer patients investigators attempted to measure the effect of a 2-year anticancer drug regimen administered as adjuvant therapy on sexual and family relation- ships, financial situations, and levels of general and work-related activity.!”* All women in the study experienced negative changes in their lives during at least part of their treatment, and described these changes as ‘“‘dis- tressing”’ and “emotionally upsetting.” The re- searchers reported that a woman’s level of stress seemed to be unrelated to her marital status, age, job status, or the treatment setting.!”* None of the women reported improved sexual relationships. For some couples, both partners experienced psychological distress which resulted in sexual problems, and in other cases, physical side-effects hampered sexual relations. For ex- ample, the lack of menstruation created anxiety among those Catholic women who depended on the rhythm method of birth control. However, loss of sexual responsiveness after breast cancer treatment also may be due to the artificial meno- pause produced by certain chemotherapeutic agents. Although 23 percent of the women claimed their marital or family relationships had been disrupted, 17 percent reported improvements in nonsexual familial relationships.!”? A general lethargy also was reported by women who participated in the drug treatment program, with 96 percent of the women experiencing fatigue, a lack of ambition, and emotional inhibi- tions. The most common manifestation of this lethargy was a reduction in activity levels. Thirty- eight percent of those studied gave up activities in which they had previously participated, and 32 percent were unable to continue work-related activities (housework or employment) they had performed in the past. Women undergoing chemotherapy lost an average of 9 work days because of drug side effects, not including time lost because of visits to their physicians.'” A number of women also were upset by phy- sical and emotional side effects such as nausea, nervousness, irritability, and tearfulness.!’* Tem- porary hair loss is often one of the most distress- ing side effects of chemotherapy, although medi- 71 cally it is not considered a serious physical problem. For the 50 women studied, the data suggested only 12 percent reported a complete return to their normal level of activity. These women had a mean time of 1 year post-surgery. Because chemotherapy regimens often continue longer than a year, additional follow-up is needed to de- termine the long-term effects of adjuvant treat- ment on a woman's activities. Prior to beginning chemotherapy, the oncolo- gist may want to explain to the patient and her partner the benefits and risks associated with chemotherapy. This would be a good time to help reduce fears by discussing the possible side effects of chemotherapy and methods to minimize the side effects, and to answer any questions the wo- man or her partner may have. Radiation Therapy. A patient’s apprehensions about radiation therapy can be fueled by perhaps irra- tional, but nonetheless real fears of being “burned,” of disfigurement, or loss of bodily and sexual functions, and of the cancer-causing poten- tial of radiation.?®* Radiation treatment proced- ures can provoke anxiety. The area to be irradi- ated is outlined by colored marks which the pa- tient cannot wash off during the course of treat- ment. She is placed on a table in a room with an ominous-looking machine, then sealed off from other people. This gives many women a feeling of isolation and of being dehumanized.?3? To help avoid anxiety about radiation therapy, the physician or radiation therapist may want to fully describe the treatment procedure to the pa- tient before she undergoes her first therapy ses- sion. Some radiation therapy facilities have im- proved the ambiance of treatment rooms by hanging attractive pictures on the wall and instal- ling two-way communication systems so that the radiation therapist and the patient can talk during treatment. In addition, the physician or radiation therapist can help lessen patient worries by ex- plaining fully how radiation works, how it can control cancer, and what side effects can be ex- pected. When the woman begins to experience radiation side effects, her fear and anxiety can be reduced if the radiation therapist or physician ex- plains beforehand that nausea, a feeling of a lump in the throat, changes in their irradiated skin, fatigue, and stress are related to the radiation treatment and not to the cancer itself. The patient’s family also may misunderstand the effects of radiation. If they mistakenly believe the patient will become radioactive and contami- nated, they may withdraw from her when she needs their support to cope with her physical and emotional distress. In such cases, appropriate fam- ily members should be included in discussions 72 with the physician or radiation therapist so that they have realistic expectations of what radiation can accomplish and can support the patient throughout the treatment process.?2° Emotional and Cosmetic Aspects of Breast Recons n the past, few surgical options were available to help women cope with the physical effects and emotional problems associated with mastec- tomy. Today, more choices are available, and a number of health professionals believe some of the emphasis in the rehabilitation process should be placed on breast reconstruction rather than on a woman’s adjustment to an external prosthesis. For many women, however, an external prosthesis is all that is necessary to replace the lost breast and to cope with that loss; they return to normal, emotionally-healthy lives after mastectomy with- out undergoing reconstructive mammaplasty. Other women, however, have found that breast reconstruction enhances their femininity and allows them to enjoy life more fully by helping them take their minds off their missing breasts. In addition to restoring a woman’s body in- tegrity and emotional equilibrium, it has been suggested that breast reconstruction may indirectly save a number of lives. If women are aware that such a procedure is available, one of their greatest fears — permanent disfigurement — may be allevi- ated.?”” When awareness of reconstructive surgery becomes widespread, the result may prove to be that more women will see their physicians as soon as they discover breast abnormalities, rather than delaying an examination because of fear and denial. Statistics on breast cancer mortality show that lives can be saved by early detection, diagno- sis, and treatment of breast cancer. The availability of and potential for breast re- construction provide women of all ages with im- portant psychological benefits both before and after their mastectomies. Patients who are una- ware of the availability of reconstruction or who have not had reconstruction sometimes are unable to take their minds off their mastectomies. Some look upon their breast loss as a form of castration: a loss of part of their sexual identity. For women 73 truction who consider themselves deformed by mastec- tomy, reconstruction may help them live normal lives again.??> For others whose absent breast serves as a constant reminder of cancer’s presence, a reconstructed breast can alleviate much of their anxiety about the disease. Of course, the extent to which emotional trauma is minimized by breast reconstruction varies. PRESURGICAL COUNSELING Cancer surgeons and plastic surgeons can play crucial roles in alleviating women’s fears of dis- figurement and ignorance of breast reconstruction. The conversation between the breast cancer pa- tient and her surgeon before mastectomy should include a frank discussion of the benefits and limitations of reconstruction and of the medical and surgical precautions that can be taken during the mastectomy to help make reconstruction easier, less expensive, and cosmetically pleasing. In reality, adequate presurgical counseling of breast cancer patients is still rare, aside from an occasional brief mention of the possibility of re- construction. Many cancer surgeons still consider reconstructive mammaplasty to be a frivolous, vain, and even dangerous follow-up to mastec- tomy. Slowly this attitude is changing. Surgeons are beginning to consult plastic surgeons more frequently to make suitable arrangements for breast cancer patients before they undergo mas- tectomy. Often, the plastic surgeon is permitted to assist the surgeon during the mastectomy and to recommend surgical procedures that will make reconstruction more feasible. In addition, as growing numbers of women are becoming aware of breast reconstruction, they are requesting pre- surgical consultations with plastic surgeons and are increasingly reluctant to use surgeons who do not view reconstructive mammaplasty as a possible option.® to dary Tome The trends toward early breast cancer detection and less radical surgery combined with recent devel- opments in plastic surgery are helping to make breast reconstruction more feasible, more cosmeti- cally pleasing, and less expensive than in the past. ANTICIPATED RESULTS Patients who are considering or who have definite- ly decided to undergo reconstruction should have a clear understanding of what can and cannot be done and what the results are likely to be.?*” Be- cause women often have unrealistic expectations regarding the appearance of their rebuilt breasts, the emotional ramifications of their disappoint- ment in the results of reconstruction are enor- mous. Showing women photographs of rebuilt breasts that accurately portray what they can ex- pect for themselves may help them visualize the outcome more realistically. Depending upon the plastic surgeon and the nature of the mastectomy, the cosmetic results of reconstruction vary considerably. Women who de- sire reconstruction may want to select a plastic surgeon who is interested in reconstructive mam- maplasty. Often the reconstructed breast is less than aesthetically pleasing; just as often, it is quite appealing. Because plastic surgeons cannot guarantee that women will look as they did before their mastectomies, the criterion that has been adopted is how a woman looks in a bra — not nude — after the reconstruction. Even within this limited framework, some surgeons are more skill- ful than others. Although women who opt for reconstruction usually attach great significance to their breasts, it is apparently of little concern to many that their reconstructed breasts do not match their remain- ing breasts. What seems to be important is the image produced by a reconstructed breast rather than the compatibility of the new breast with the old one, or even its appearance. One surgeon re- ports that the mere creation of a breast mound in the shoulder hollow of women with radical mas- tectomies does more to improve women’s morale than does any other part of the reconstructive procedure.?%’ NIPPLE BANKING A number of surgeons advocate saving the nipple, 75 whenever possible, and banking (or grafting) it to another part of the patient’s body for temporary storage until it can be regrafted to the reconstruc- ted breast. In many cases this procedure has ex- cellent cosmetic results and serves as a reminder to a woman prior to reconstruction that her sur- geon is committed to rebuilding her breast. Many women are content with their new breast mound, however, and do not feel the need for having a nipple and areola reconstructed. Ap- parently they do not feel these additions are nec- essary to enhance their self-image.?* For others, reconstruction of the nipple and areola after initial reconstruction of a breast is vital to their psycho- logical well-being. ADVANTAGES AND DISADVANTAGES Although a reconstructed breast never will be identical to the remaining breast and does not re- place the organ that was lost, reconstruction can be considered a psychological victory that im- proves a woman'’s physical functioning, appear- ance, and sense of freedom. Aside from the psychological benefits of breast reconstruction, the operation can make a woman’s day-to-day life easier in a number of other ways. Women who have had a breast (or breasts) rebuilt once again can wear the low-cut blouses, evening dresses, and swimsuits and participate in active sports they may have abandoned while they relied on external prostheses. Nonetheless, thousands of women have ad- justed successfully to their mastectomies and do not want to have their breasts rebuilt. Some wom- en simply do not want to go through another hospitalization and surgical procedure; some con- sider reconstruction vain; and others reject recon- struction because they feel that women should accept their mastectomies rather than try to alter the results. Even so, a number of women who de- cide against breast reconstruction admit they are often comforted by the knowledge that the opera- tion is available to them if they should change their minds.!'38 Coping with Recurrence, Metastatic and Advanced f symptoms of breast cancer recur or metasta- sis appears, old psychological wounds can re- open and the patient may re-experience her initial fears of diagnosis. These fears often result in a patient’s delay in seeking medical attention as a way of avoiding the return of cancer, in much the same way she may have avoided medical help when she discovered the first symptoms of breast cancer months or years earlier. To prolong the fantasy, the patient may make excuses such as, “It’s only a swollen node,” or, “I’m losing weight because I’ve been too busy to eat.’’236 DIAGNOSIS Women who delay seeing a doctor for symptoms of a possible breast cancer recurrence include those who blame themselves for the cancer’s re- appearance and those whose negative feelings about themselves would be reinforced by a diag- nosis of a second cancer; those who fear the side effects of cancer treatments; and those who fear death, feel that recurrence signals the beginning of the end, and believe that nothing can be done to stop it.236 Once a recurrence or metastasis is diagnosed, some patients deny the diagnosis to avoid their fears. Discussion of the disease often is carefully avoided, and some patients offer alternative ex- planations for physical symptoms.?36 In addition, the relationship the patient has with her physician may change. Fear of abandon- ment may force good behavior from some patients they will wait for hours to see the therapist and seldom complain or protest a change in doctors. This fear and the response of good behavior may increase in direct proportion to the progression of the illness. TREATMENT Other patients blame the physician or the initial treatment for the cancer’s reappearance, and may bypass traditional medical resources in favor of ’ 76 those promising a cure by more “natural” or magical means such as faith healing, controversial vitamin supplements, and unproven drugs. If aware of the patient’s vulnerability to these “cures,” the physician can try to persuade her that they are of no value and thus hope to steer her toward con- ventional therapy. The physician also can indicate a willingness to investigate new treatments the patient may sug- gest. By suggesting the patient see another on- cologist for a second opinion or by taking her case before a team of specialists for review, further concern for the patient can be shown. A straightforward review of treatment methods and their effects by the physician can help the patient anticipate physical and emotional reac- tions produced by surgery, chemotherapy, and radiation therapy. Women who have experienced severe side effects during their initial cancer treat- ment may be reluctant to undergo the discomfort again. But when disease reappears and the patient’s options are known, she will frequently decide to fight for her life.236 Older patients who feel their lives have been long ones may be reluctant to undergo further treatment, particularly if their age involves addi- tional discomfort or disability. It may be necessary to postpone treatment temporarily until the pa- tient makes a final decision. In one study by a clinical nurse of women hos- pitalized for metastatic breast cancer, all patients said that the most discouraging aspect of hospital- ization had been the seemingly endless laboratory and radiographic diagnostic studies. Awaiting re- sults seemed to be one of the most difficult as- pects of treatment, and patients were often less anxious when the nurse assured them that she was waiting with them. When test results were con- firmed, the nurse tried to help patients and their families by clarifying and explaining the treatment that was planned. 66 In this study, radiation therapy was the pri- mary treatment used to prevent the spread of the disease and to reduce pain. When nurses and radia- tion therapists carefully explained the side effects of radiation and the necessity for staying in bed, patients tended to be more cooperative and trust- ing of hospital staff members. Many patients who were unaware that fatigue and weakness resulted from radiation therapy believed they were getting worse because they were so tired. The nurses’ ex- planation helped relieve some of these fears. LIFESTYLE CHANGES Metastatic breast cancer can have profound effects on a woman's life. Because of increasing pain and physical limitations, a woman may no longer work outside the home, take care of her house and fam- ily, and take part in many of the activities she en- joyed in the past, such as shopping, entertaining, and excursions with her family. Her life may be constantly interrupted by repeated hospital ad- missions for chemotherapy or radiation treat- ments, necessitating arrangements for housekeep- ing and babysitting help, and resulting in increased medical and household expenses. In addition, the patient must deal with the pity and fears for her life implicitly or explicitly expressed by her family and friends. Breast cancer, which often metastasizes to the bone, chest tissue, viscera, or brain, may be ac- companied by intense pain as the disease progres- ses. In one study, patients repeatedly told the nurse that they “could handle the progression of their disease, but they could not handle the pain as a constant reminder that death was inevitable.”1¢¢ Some of the patients in the study were so afraid of increasing pain that they would not try to move from one position to another, feed them- selves, improve their personal appearance, or even communicate with hospital staff members. When medicated for their pain, many patients’ interest in their personal needs increased along with their interaction with staff members. Because many of the patients studied wanted to care for themselves, they needed a nursing plan that took their special problems into considera- tion and allowed them to work at their own pace. Since most patients wanted to do as much as they could for themselves, the nurses included them in planning daily schedules and activities. After the nurse listed the scheduled daily activities such as bathing, eating, and preparing for radiation therapy, the patient was allowed to decide what 71 was most important to her, and the nurse tried to arrange the activity so that the patient could accomplish it. Nurses tried to convey to each patient that they would do everything they could for her comfort, and every day or every other day tried to arrange a specific time the patient knew would be spent talking with a nurse. Both patients and nurses re- ported that this was the most valuable experience for them since it allowed the patient to talk about whatever was bothering her and gave the nurse a chance to evaluate the effect of the patient’s nursing care. Coping with all these problems can be extreme- ly difficult for even the most well-adjusted and capable woman, and many patients need the as- sistance and support of medical professionals and family members to help them deal with their pain, fears, and anxieties. Physicians, nurses, social workers, psychologists, and psychiatrists all can contribute their skills and support to the patient and her family to help them through this difficult period. Family members can be encouraged and taught to provide the patient with medical care, comfort, and help her feed and bathe herself, and take over many of the household responsibilities she can no longer assume. Health professionals and family members also can provide the patient with the emotional support, sympathy, and en- couragement she may need during her battle with metastatic disease. ADVANCED (OR TERMINAL) ILLNESS Medically, the terminal breast cancer patient passes through three general phases: diagnosis and initial treatment; the stage in which the disease has recurred or metastasized and additional treat- ment is administered; and the advanced or termi- nal stage, in which treatment is limited to making the patient physically comfortable. The patient’s coping strategies change during these three stages. In the first stage, when treat- ment appears successful, patients may retreat from repressed fears and need less therapeutic discussion with medical personnel. When breast cancer has recurred or metastasized, the patient may fear that her physician and family will aban- don her. Some women become meek and submis- sive to avoid any confrontation that may cause others to abandon her. Other women withdraw from their families in anticipation of their fam- ilies’ retreat from them. In the advanced, or terminal stage, when treat- ment is palliative only, the fear of abandonment may be augmented by the fear of dying. However, it has been reported that with the end in sight, some patients, “displayed a positive form of with- drawal or detachment. They often developed a total acceptance of the nature and eventual result of the illness without any appearance of anxiety.”? Psychological Phases of Terminal Illness. Five phases have been identified by one psychologist as part of a cancer patient’s psychological adaptation to the knowledge of terminal illness: denial, anger, bar- gaining, depression, and acceptance.!3% These phases, however, are not an inflexible series of psychological responses to death. The patient may not experience all of these phases, may go through them in different order, or may experience more than one stage at the same time. After the initial shock, some patients deny the extent of their disease for a period of time. Char- acteristics of this denial include cheerfulness, ex- cessive optimism, or outright rejection of the grim prognosis. The manner in which the patient has learned of her condition, as well as the reactions of those around her, will influence her ability to confront reality.'3’ When a patient stops denying and no longer says, “No, not me,” her response may change to “Why me?” She sometimes feels angry and bitter about the great injustice of her situation. This may be a dangerous time for family relationships; those closest to the patient can be major targets for her hostility, and bewildered family members may lash out at the patient in return. During this stage, it is vital to the patient’s mental equilibrium that she be allowed to express her sense of help- lessness without an angry response from family members. !3% Some patients go through a bargaining stage, typified by the patient’s promise to change her lifestyle for more time. Bargaining is done with God or any other significant entity with whom the patient can exchange some promise for “one more year of life,” or at least enough time to achieve a specific goal.!3% After bargaining, a “Yes, me” stage may follow. The patient is depressed and mourns, often silent- ly. Withdrawal and loneliness characterize the de- pression. This can be the most trying period for health professionals and families. However, those involved with the patient must understand that she is about to lose not just one beloved person, but everyone she has loved and everything that has been meaningful to her.!3% Depression may be followed by a stage of ac- ceptance. This is not a feeling of resignation or de- feat, but rather a positive attitude: “I have now finished all of my unfinished business. I have said all of the words that have to be said. I am ready to go.” In the acceptance stage, patients are not especially happy, nor are they terribly sad. Those not in pain may slip into a stage similar to “the beginning of life—when a person has physical needs and needs only one person to give her some tender loving care and compassion.”’13¢ The premise of patient acceptance is questioned by some health professionals who have observed that, in their experience, most cancer patients never reach a stage in which they calmly accept the approach of their own deaths. It also has been observed that “Somewhere be- tween open acknowledgement of death and its utter repudiation is an area of uncertain certainty called middle knowledge . . . Middle knowledge tends to occur at serious transition points, such as when a patient begins the descent to death, under- goes a setback,” or sees some of the people upon whom she depends begin to doubt that she will survive her cancer.?®? Throughout the terminal phase of her illness, the patient may fluctuate between denial and accept- ance. She may seem to know she is going to die, yet at the same time she may sound as if she knows nothing about her condition. The patient may accuse her physician of not having warned her of complications or of the possibility of im- minent death, despite the fact that she has been kept informed of her prognosis throughout the course of her disease. It is vitally important for the patient to know that her physician is not going to abandon her or her family, but will stay in contact and be avail- able to discuss her physical and emotional con- cerns, provide comfort, and help her die with as little pain as possible when the time comes. The physician can assure the patient and her family of continuing support by letting them know how he or she (or a colleague) can be reached by tele- phone. Physicians often are reluctant to provide patients with a direct line to their personal lives, but generally calls are few. Knowing the physician is available is comfort in itself.?3¢ Death does not come as a sudden shock to the cancer patient with advanced disease. She may have spent months or years receiving drug and radiation treatments, undergoing surgery, and en- tering and leaving intensive care units in hospitals. She has probably seen other cancer patients die while she has been hospitalized for treatment. Nevertheless, in the terminal phase, she must face 78 the fear of nonexistence.!” A patient with strong religious beliefs in an afterlife may not fear non- existence, but her anguish at the prospect of leav- ing her family, friends, and life experiences may be intense. Medication. In the advanced stage, the patient may want to make some decisions regarding medica- tion. She may be willing to endure pain in order to maintain a clear mind or she may desire a strong pain killer which will decrease alertness and make her sleepy. Whatever the case, the phy- sician should inform the patient and family of the drugs’ effects.’ The Hospice Concept. The recent trend for the termin- ally ill is to allow patients to leave the hos- pital and die at home. Caring for a patient’s spe- cific needs can be trying for family members if they do not have appropriate support from medi- cal and mental health professionals. The hospice concept is an approach to providing care for terminally-ill patients and their families. Central to this concept is the belief that death is a family matter. The philosophy behind the hospice con- cept is to manage terminal disease so patients live with dignity until they die; their families live with them as they are dying; and the families continue living afterward.'! England’s hospices, free- standing facilities unaffiliated with hospitals, are the predecessors of the United States’ hospice movement. In this country, however, hospice is a philosophy — not necessarily a place — that emphasizes ® help in dealing with emotional, spiritual, and medical problems support for the entire family keeping the patient at home for as long as possible and making the remaining days as comfortable and as meaningful as possible professional services from a health care team supplemented by volunteer services, as indi- vidual circumstances require ® relief of pain and other symptoms Although a primary goal of the hospice ap- proach is to provide emotional support for the patient and family, the importance of physical care cannot be underestimated. Attention to symptom control, including the relief of pain, are just as important to a dying person as emotional counseling. Anticipating pain and administering medication when needed (as opposed to timed dosages) are important to pain management for hospice patients. Keeping the patient comfortable yet alert is the goal of most programs, often achieved by the use of narcotics. A variation of England’s “Brompton cocktail,”” with morphine substituted for heroin (sometimes used in Eng- land), is given to patients in many American hospices. New Haven’s “Hospice mixture,” for ex- ample, contains morphine dissolved in cherry syrup combined with a phenothiazine. Hospice programs are attracting interest from many communities in the United States. More than 90 health care organizations in 34 states currently are planning or developing hospice serv- ices. Those in existence generally fall into two categories: home care programs and separate facil- ities, both free-standing and hospital-based. Home care programs, in which patients are re- ferred to a central administrative office, usually are directed and coordinated by a community group. Patients are referred by hospital discharge planners, social workers, families, clergy, and others. Specific care policies will vary among in- dividual patients and organizations, but the Hospice of Marin provides a representative ex- ample of home care programs. Upon referral, staff members interview the patient and family and work with the patient’s physician to establish a program of professional and volunteer assistance. Families are seen by members of a multidiscipli- nary team at least once a week, although their services are available 24 hours a day, 7 days a week. In addition to providing direct care, hospice nurses teach family members to care for the pa- tient. Family counseling, including emotional and spiritual support, is an ongoing effort bolstered by frequent telephone contact. After death, bereave- ment follow-up with the family is accomplished by telephone calls, visits, and monthly gather- ings.>® (See Information and Education Programs.) 79 The Family Copes with Breast Cancer ancer can affect a family in much the same way it invades the body, causing it to deterio- rate if left untreated.??! A woman’s ordeal with breast cancer deeply affects others who are close to her. The patient’s partner, children, parents, and siblings experience many of the same emo- tional traumas she herself endures. Although primary medical support is given the patient by the surgeon or referring physician, other professionals can help the patient and her family talk about and work through their prob- lems. Psychiatrists, psychologists, social workers, public health nurses, occupational and physical therapists, and religious counselors can be turned to for help. Unfortunately, these professionals often are contacted only as a last resort, when breakdowns in family relations are already obvious. Much of the emotional distress suffered by patients and their families over the course of the woman’s ordeal with cancer can be minimized if these pro- fessionals are included as part of the health care team from the time of diagnosis and are consulted as needed during the course of the disease, or until the patient’s emotional and physical health are re- stored and family coping problems are resolved.?% FAMILY RELATIONSHIPS Family members suffer many of the same anxie- ties the patient feels: shock, denial, and anger at the diagnosis, and guilt for opportunities missed or things they fear they might have done to cause the disease. Ignorance about the nature of cancer is respon- sible for most of the fears expressed by families of cancer patients. Because many families assume that cancer is always fatal, they may ignore the patient’s positive and hopeful attitudes toward her prognosis, treatment, and rehabilitation, and thus fail to give her the confident support she needs. Oftentimes, when they are around the patient, family members may pretend that they are igno- 80 rant of her condition. In response, the woman also may feign ignorance to protect her family. As a result, a framework of mutual deception develops, becoming increasingly complex if the disease pro- gresses. The patient may react to her family’s denial of her cancer and her concerns with distrust (“They lie to me”’) and may withdraw from them. Thus, the patient and her family may uninten- tionally abandon one another, and mutual feelings of rejection develop. Some families believe they should react to the patient’s anxieties and depressions by assuring her that “everything will be all right.” This assurance, though well-intentioned, may not be what the woman wants or needs to hear.'3! The family must understand that the patient who withdraws may be crying for help, silently telling those close to her that she cannot cope with her problems alone. Withdrawal does not neces- sarily indicate a lack of desire for closeness and love, but simply an inability to reach out or a fear of expressing need. The patient who is unable to discuss her feelings with or ask questions of those closest to her must bear the burden alone. She suffers most when she wants to talk but does not — or cannot — because she is trying to protect her family’s feelings. Be- cause of family avoidance of the patient’s cancer, the woman faces the difficult task of bolstering family morale, when it is she who needs to be comforted and cheered. Family structures are sensitive networks char- acterized by similar value systems and methods of communication. Some families have communica- tion standards in which only pleasant feelings are rewarded, while unpleasant emotions are blocked out. Family members who cannot face the pa- tient’s diagnosis, who refuse to acknowledge her fears as well as their own, or who do not accept her tears or provide her with the love and support she needs can greatly hinder the patient’s ability to cope with her disease. On the other hand, communicative families that have previously dealt well with stress will help the patient cope with her disease. In turn, if the pa- tient is capable of resolving her own crises, she can help members of her family cope with their emotional problems.!3! One of the most common problems experienced by family members and friends or cancer patients is the fear of not knowing what to say. Honest feelings should be expressed, and when words can- not be found, a sense of closeness can be com- municated nonverbally. Holding the woman’s hand or putting an arm around her shoulder can convey feelings of warmth and compassion that are otherwise difficult to express. Because pa- tients often feel isolated by their illness and do not know how to react to family and friends, phy- sical contact helps reduce that feeling of separation.'® Preoccupation with the details of day-to-day living can lessen the amount of time the family can spend supporting the patient. If arrangements can be made for household help, transportation, or bedside care, the family can relieve itself of some of its usual responsibilities to spend more time with the patient. Of course, family members cannot be expected to spend all of their time worrying about the pa- tient. They need time away from her and respite from the constant strain the disease places on them. This is particularly important if one family member has assumed the major responsibility for caring for the cancer patient. Children may have been neglected during their mother’s illness, and their father needs to set aside frequent periods of time in which to talk and play with, listen to, and simply be available to their children. In addition, the patient’s partner must have occasional outlets of his own to maintain the psychological balance he needs to deal with his emotions as well as the emotional needs of the patient.!!2 Although the special needs of the cancer pa- tient must be met, the family should avoid over- protecting her. Overprotectiveness thwarts the patient’s ability to integrate the reality of the disease into her life. If she is shielded, she may become unnecessarily dependent on the family, and her feelings of worthlessness may be intensified. Anticipatory mourning, a process of emotional reactions and adaptations to illness when death is expected, is seen among patients and their fam- ilies upon the diagnosis of cancer although grief (its main emotional component) increases as the terminal stage is reached. When acknowledged by patient and family, this will allow them to mourn the impending death together. This confrontation with the reality of the illness will help them re- arrange their priorities and focus on the quality of life for however long they have left.254 A variety of methods are used by families to deal with a patient once her cancer has reached the terminal stage. Some families continue to focus entirely on her needs, postponing their own grief. One researcher explains that a family member sometimes feels the patient would be better off dead: “I think I want death at last to free you — and me.”?" Families who have depleted their emotional resources may write off the patient precipitously and begin to mourn while she is still alive. In such cases, when death occurs, it is not a highly stressful situation, but an anticipated loss coming at the end of a long sequence of events.'!? There may be relief that the long suffering for both patient and family is over. However, unless family members are helped to understand that their grief is a normal response, guilt about their feelings and forced grief may result. After the patient’s death, family members can derive comfort and support from one another and from their memories of happy, fulfilling times. One researcher has observed several stages through which the family will pass after the death of the patient. First, survivors feel a numbness or denial, followed by a phase of pining or struggle, reviewing events, and searching for someone to blame. With the passage of time, these pangs of grief dissipate, and family members may become apathetic and withdrawn. Slowly and haltingly, they will emerge from this depressed stage to ac- cept their loss and plan for the future.??! Another researcher further explains the process of bereavement. Following the initial numbness, the family may experience great anxiety and anguish. The survivors crave and cry for the de- ceased, ‘‘often with intermittent anger, even traces of delusion, depersonalization, and hallu- cinations.””?®® Health professionals can help mem- bers of the patient’s family through the period of bereavement by assuring them that such reactions are common when working out grief, and their anxieties are natural. Eventually, the family learns to accept the pa- tient’s death. Bereavement is complete when fam- ily members once again begin to function normally .?80 81 THE PARTNER COPES WITH BREAST CANCER The patient’s partner plays a major role in deter- mining family attitudes during his wife’s experi- ence with breast cancer. Because of the impor- tance placed on sexual relationships in this society, the man’s involvement with the patient and his reaction to her breast loss may be critical to her emotional well-being. A woman'’s fears of breast loss are largely based on her measure of her worth as a person and her anxieties about how others will respond to her disfigurement. Her involvement with a man and their relationship prior to the onset of breast cancer can complicate or simplify her recovery. The man’s reaction to the woman’s breast loss closely affects her feeling toward her loss. Most women interpret a negative response as physical rejection, and interpret avoidance as pity. The effect of such responses on the woman can be catastrophic. However, if the partner’s response is supportive, her recovery will be greatly enhanced. Mastectomy patients may have additional fears peculiar to their age and marital status. A single woman who is not involved with a man may feel that she has lost her chance for a relationship or marriage; the married or unmarried woman with a partner fears she will lose him; and the woman whose partner does leave her is dealt a shattering blow to her feelings of worth and desirability, and is faced with thoughts of being alone forever. Responding to Mastectomy. Although hard data on men’s response to their partners’ breast cancer are limited, there is evidence that men react in a much more positive manner than most women expect. One psychiatrist who has helped many people deal with mastectomy estimates that only 5 to 10 percent of couples have major problems after breast surgery, and that another 20 percent may have moderate difficulties. He believes that good marriages may not only survive mastectomy, but frequently improve. Troubled marriages may not survive the wife’s battle with breast cancer because the relationship is too fragile to withstand stress, not because of the nature of the disease.'?® Many of the difficulties couples face after a mastectomy generally involve a lack of communi- cation between the patient and her partner. A woman may silently fear that her husband will abandon her because he does not want to be mar- ried to a one-breasted woman, while her partner may be afraid to express his overwhelming fear 82 , hss. il that his wife will die. Even six months after sur- gery, observes one psychiatrist, “men seem much less concerned than women with the physical and sexual aspects of the operation.””128 A loving response by a man will help allay the woman’s fears that their relationship is in jeopardy or that his feelings for her have changed.?8® His tenderness and sympathy for her loss can reassure the patient that the important thing to him is that she is alive, that/their relationship will continue in spite of the surgery (rather than ending prema- turely because of cancer), and that her mastec- tomy does not change his love for her. Most husbands are deeply concerned about how they will react to the wound and how they should respond. Some husbands may have strong adverse reactions to seeing the wound and deliberately avoid looking at it.!?® This reaction can confirm the woman’s fears of rejection and may force her to conceal her scars. Obviously, most men will not be able to treat the wound casually at first, and should be told by the surgeon or another health professional that a normal reaction to the opera- tive site will include degrees of shock, disappoint- ment, anxiety, and sorrow. \~While most men accept their partners’ mastec-* tomies with love and support, many need help in sorting out their feelings and learning how to deal with their wives’ anxieties and needs. In their be- wilderment, they often make mistakes that con- fuse or hurt their partners. For example, a man who expresses pity can reinforce his wife’s fears of being rejected, and a husband who tries to re- assure his wife by telling her that her fears are silly can force her to bear her emotional burdens alone. One common pitfall is oversolicitousness. One husband reported that when his wife came home from the hospital he “catered to her so much she became worried. She wondered if the doctor had told me she was terminal.”!?8 Because husbands often have as many ques- tions, fears, and anxieties about mastectomy as their wives do, a number of counseling groups for men have been developed. Many rely on hus- bands of mastectomy patients who volunteer to meet and talk with other men who contact them for help. One American Cancer Society Reach to Recovery volunteer believes that the biggest prob- lem faced by such self-help groups is getting men to overcome their traditional reluctance to ac- knowledge emotional needs or ask for help.!?® Because some of the woman's feelings about her mastectomy scar are similar to those of her partner, sharing their sorrow and becoming used The patient’s relationship with friends and family prior to the onset of breast cancer can complicate or hasten her recovery, and may play a major role in determining attitudes of these individuals throughout treatment and recovery. to the disfigurement together can be an important step toward their mutual acceptance of the mastectomy.?'® They might spend time focusing on the man’s body, accepting how it has changed over the years. Some men have more trouble accepting imperfec- tions in their own bodies than their partner’s new body image. This confrontation not only allows the couple to share the changes in their bodies, but also to reaffirm the importance of being alive and together. Sex. If the man is afraid his wife is too weak or not ready for sexual intercourse, or will be injured during sex, he may wait for her to initiate it. This reticence, however, can confirm her fears of rejec- tion and she may withdraw from him. The hus- band should be aware that, to his wife, his desire to have intercourse with her is often the best way to convince her she is still sexually attractive to him. It is another way of communicating that his love is undiminished and that she is still sexually desirable. Thus, in some cases, the earlier inter- course takes place, the better. In other cases, the woman may need more time before she feels physically and emotionally ready for intercourse, and the husband should take his clues from her response to his suggestions or advances.?%? Because the woman may be physically weak or may have difficulty supporting herself with her injured arm, the couple should select an appropri- ate position for intercourse. The husband should be aware that his wife’s chest area and back may be numb, and stroking or pressure might not be a pleasant sensation. The woman should tell her partner what is pleasurable and what is not.?®° A woman’s decision about wearing her prosthe- sis during sex is closely tied to her ability to con- front the wound. Physically, the prosthesis may put uncomfortable pressure on the injured chest and be rather confining. Psychologically, wearing a prosthesis during intercourse may perpetuate denial of the mastectomy by both partners. The desire to create an illusion is not necessarily linked with denial of breast loss, and wearing a prosthesis at first might help contribute to a resumption of sexual activity in some cases. The prosthesis can be removed when both partners decide they are ready to confront the issue.?®’ If a woman is too weak for intercourse or the man has problems achieving or maintaining an erection, he can still kiss and caress her, tell her how happy he is to have her back home with him, and reassure her that she still is desirable.?®® Changes in the body resulting from mastectomy may force a couple to re-evaluate their relation- ship, the woman's self-concept, and her body image. Because the woman’s body has changed, her sexual role also may be altered in her mind and may need to be redefined. Sharing thoughts and feelings and discussing their individual and joint roles can sometimes result in a new close- ness, greater spontaneity, openness, sensitivity, and physical awareness between wife and husband. Because of this new closeness, some women report they have an improved sex life, have more sexual freedom, and have achieved greater compatibility with their partners. CHILDREN COPE WITH BREAST CANCER Many families protect children from the fact that their mothers have cancer, creating unsettling suspicions in their minds. Children are perceptive and can sense when something is wrong or differ- ent with a parent. Preschool children often conjure up very frightening fantasies to explain a mother’s absence. The child may feel deserted by this “mis- sing’’ mother. After surgery, when the patient re- turns home, her weakness and depression may threaten the child who feels insecure with this “different” mother. Because young children’s re- sponses to cancer are determined to a great degree by that of older family members, children need the family’s reassurance that the physicians and the hospital are giving their mother the best possi- ble care.2®’ Informing the Children. Ideally, the patient and her husband decide together how to inform the chil- dren of their mother’s hospitalization and illness. To prepare themselves for a discussion with their children, parents may anticipate questions the children might ask, or may have but do not ask, and respond to these questions on a level children can understand.!?! Some children become resentful of parents who are ill, while others fear them and are traumatized by visits to the hospital. Others feel guilty, think- ing that perhaps they may have caused the illness. In some cases, children will withdraw and act out their anxieties. Adolescents. Adolescent children of breast cancer patients may confuse and anger their parents by sudden and bewildering behavior changes, includ- ing promiscuity, drinking, belligerence, and refusal to help them with chores or to visit their mothers in the hospital. One psychiatrist explains such be- havior as the result of some children’s anger and frustration at being forced back into family prob- lems just when they are beginning to break paren- 84 The response of young children to cancer is determined to a great degree by that of older family members. Children, therefore, need the family’s reassurance that the doctors and the hospital are giving their mother the best possible care. tal bonds in preparation for lives of their own. If an adolescent is put in the position of acting as a pseudo-parent or partner for the well parent, or is used as a scapegoat for the frustrations of both parents, the result may be that the child feels forced into destructive behavior.?8 Teenage daughters of breast cancer patients need special attention. Because the young girl’s breasts are developing, she wonders whether she also will be susceptible to breast cancer. Parents with teenage daughters may be apprehensive about confirming the young girl’s fears. Here again, the unknown is more difficult to deal with than the truth, and a young woman can uncover or imagine 86 enough information to confirm her suspicions, whatever they are.!3! The patient’s ability to communicate with her daughter will help allay some of the young wom- an’s unnecessary fears. An explanation of the daughter’s above-average risk status, the impor- tance of practicing breast self-examination and having regular breast examinations, and letting her express her anxieties, will help the daughter prop- erly adjust to her own situation. If handled cor- rectly, this mother-daughter discussion may open the door to greater sharing between them and establish a good example of coping for the woman- tobe ist The Health Professional Copes with Cancer o members of the medical team, oncology can be a rewarding profession, but at the same time can involve anxiety and depression. The re- sponsibility of caring for suffering, disfigured, and often terminal cancer patients makes endless medi- cal and psychological demands on the oncology staff. THE PHYSICIAN COPES Physicians who treat cancer patients exclusively may have only brief periods of relief from the emotional and professional pressures of their jobs. The extent to which these pressures might hamper the physician-patient relationship or the physi- cian’s judgment and effectiveness is sometimes overlooked. A physician’s reaction to the patient may be as complex as the patient’s reaction to her cancer.!3 To avoid serious depression and pressure, the physician unintentionally may arrange his or her schedule so that little time is spent with each cancer patient, delegating treatment to a nurse or other health professional. This method of coping by the physician may deny a breast cancer patient the security, support, and knowledge she needs to cope with her disease. The physician who treats cancer patients must continuously confront his or her own feelings to- ward cancer and death, for a physician’s attitude is reflected in the relationship with the patient and advice to her family. Because physicians tend to view themselves as healers, the death of a patient may seem to be a defeat. Patients with cancer, especially cancers with high mortality rates, are thus the most difficult cases. The oncologist cannot escape daily contact with cancer patients; and this contact serves as a constant reminder of personal mortality. Physicians’ attitudes about cancer began to form long before they entered medical school. Outdated beliefs that cancer is always fatal were 87 reinforced throughout their years of training by older physicians. Dealing with cancer always has been associated with dealing with death—the phy- sician’s adversary.'3 Unfortunately, such fatalistic attitudes toward cancer may be communicated unintentionally by the physician to cancer patients in the form of pessimism or doubt about the diag- nosis, treatment, and prognosis. Although breast cancer patients are admittedly in danger of suc- cumbing to their disease and need to know the risks involved, a physician who personally doubts that any breast cancer patients will survive may not be able to provide the encouragement and sup- port patients need to battle the disease. One study indicates that when patients do die, the three most prominent physician reactions are anger, denial, and depression /resignation, pre- cisely the common reactions of patients to their own suspected or imminent deaths. A physician may use anger as a defense against anxiety. This anger “allows the physician to trace the death to external circumstances, overwhelming disease process, patient and family tardiness in seeking help, bureaucratic complications, etc.”” Oncolo- gists, whose patients often do die, cannot regard each death as a personal failure, or their self- esteem would be seriously threatened or possibly destroyed. Equating the death of a patient with the failure of the physician is usually erroneous, as well as unfair, both to the physician and to the patient.? Although the physician attempts to fill the roles of healer, information source, and counselor, enough time does not exist to care for all the needs of a breast cancer patient and her family. A surgeon may feel time is better spent in the oper- ating room eliminating disease rather than holding a patient’s hand at her bedside. However, the psy- chological problems resulting from the potentially terminal nature of breast cancer and the disfigur- ing surgery required dictate that the patient’s emo- tional needs cannot be ignored. As the manager of the patient’s primary care, the physician often may feel an overwhelming burden. This can be lightened by enlisting the help of nurses, psychiatrists, psychologists, social workers, and occupational and physical therapists. The team approach to medical care provides valu- able assistance to both the physician and patient, since most of the responsibility for the emotional well-being of the patient and her family can be shared with those members of the team who have specialized knowledge and training in the various psychological and social aspects of cancer manage- ment. The patient needs to know that someone will be there to provide her with “safe conduct,” particularly in the advanced stages of breast can- cer. If the physician cannot provide this support, other team members can be called upon to do so. THE NURSE COPES Nursing entails more direct patient contact than any other health care profession. The nurse has two types of duties in caring for a patient: those that arise from a physician’s orders (such as pre- paring a patient for surgery or using special equip- ment), and those that provide personal assistance or comfort. With a breast cancer patient, the nurse has additional responsibilities: helping the woman prepare herself for and adjust to the loss of her breast; changing surgical dressing and caring for the wound; and teaching the patient about self- management, exercise, and prostheses. To earn a patient’s trust, respect, and coopera- tion, the nurse must project a professional image of confidence in her skills, a knowledge of patient care and possible complications, and the ability to handle any situation that may arise. Like the phy- sician who treats cancer patients, the nurse also must adopt a healthy philosophy about death. Female nurses involved. with a breast cancer pa- tient must confront their own feelings about mas- tectomy if they are to maintain their emotional equilibrium, 3? A number of health professionals are beginning to realize the value of having a nurse spend some time sitting by a patient’s bed, talking with the patient about her feelings, and teaching her about her illness. During daily contact with a breast cancer patient, a nurse can become sensitive to the patient’s emotional needs. Ideally, a nurse can interpret the meaning of the patient’s behavior, anticipate her emotional problems, and give her the empathy and support she needs. Although it may be difficult to identify with the patient’s psychological problems and pain, the nurse can communicate support and interest, and can encourage the patient to express her feelings.!3? Although the patient’s physical dis- comforts may be psychologically generated, her anguish is real.?’ A few cheerful and encouraging words to a patient about her progress can go a long way,!*® and a simple touch or an understand- ing look can communicate warmth and support when words are hard to find.!3? Inservice programs which would help improve nurse-patient dialogue are sorely needed to pro- vide the nurse with the professional expertise necessary to assist a patient in dealing with her problems. Patients who are afraid of directing hostilities toward their physicians sometimes make nurses the objects of their anger, both because they are so intimately involved in patient care and because nurses may represent ‘“whole’” women. Although it is difficult to be unmoved by a patient’s criti- cism or hostility, it is important for nurses to understand the feelings that provoke such re- sponses and not to take these remarks personally or react defensively. Breast cancer patients can be agitated, fearful, and demanding. Communication of anxieties sometimes is subtly discouraged by diminished staff attention to and a lack of sympathy for these “difficult” patients. It is confusing and unfair to patients when they are encouraged to discuss their emotional problems and then penalized for doing so. In addition, it is an obvious contradiction in treatment goals and methods. On the other hand, patients may suppress their anxieties because they believe their stoicism will be rewarded by increased staff attention. Iron- ically, nurses may overlook these patients because they appear to be adjusting well to their mastec- tomies. Then, after they are released from the hos- pital and no longer feel pressure to be cheerful “model” patients, these women may become with- drawn and depressed. Although it is sometimes difficult to avoid, nurses must be careful not to let the often routine nature of their jobs result in mechanical behavior. Nursing duties are similar for most cancer patients, yet the experience of breast cancer is unique to each patient, and the nurse’s compassion and sup- port are needed. If administrators and supervisors are sensitive to the needs of both patients and nurses, a flexible nursing plan for cancer patients can be arranged. Such flexibility permits the nurse 88 to spend time with her patients talking about any physical or emotional difficulties they may be having, uninterrupted by other chores and respon- sibilities. This can alleviate the patient’s frustra- tions about not having enough time to discuss her problems with hospital staff members, as well as reduce time pressures on the nurse and increase her confidence and pride that she is doing all she can to help the patients under her care. The nurse must watch the patient carefully for clues of physical and emotional distress; whenever possible, the daily nursing procedure should be adapted to the patient’s needs and changed if necessary. Providing care and support to the terminally-ill patient is a difficult responsibility. One medical social worker offers the following advice to all caregivers : Be available when needed; in particular, try to visit the patient regularly. Accept the patient as he conducts himself: his silence and withdrawal, his resignation and de- pendence, his manner and place and time of dying. Take the role the patient assigns you: do not expect too much from the patient or attempt to influence his emotional, social or spiritual outlook. Make it easy for him to accept or reject help. Make sure that the needs of the patient and his family are available when called for, including advance preparation for the death. Be aware of where it may occur, whom to call, funeral arrangements. Remember that everything said and done at this time should be appropriate to the real gravity of the situation. The atmosphere should be such that the patient and his family can grieve together and separately. It is [oftentimes] ap- propriate also for caregivers, both professional and nonprofessional, to show sorrow. ! THE TEAM APPROACH TO PATIENT CARE Because health is a state of both physical and mental well-being there are obvious advantages to the team approach to medicine. The patient can be approached as a total person by drawing upon the expertise offered by specialists in various other health care disciplines such as social work, psychi- atry, psychology, and physical therapy.?’* A trained, skilled group of health care specialists can more readily treat the total patient than can a physician or nurse working alone. The highly- complex art of medicine and the variety of sys- tems and services available to cancer patients have 89 become too sophisticated for any one or two people to handle without assistance from other specialists. It has been observed repeatedly that the earlier a patient begins to work with health care special- ists trained to help her deal with the physical and emotional problems associated with breast cancer, the more effectively she will adjust to and cope with her situation. If the patient begins to cope effectively with her breast cancer early in the dis- ease process, it is probable that the members of her family also will be able to deal with their anxieties about the patient’s disease. In this way, serious problems and breakdowns in family rela- tionships with the woman may be prevented. A social worker, if properly educated and trained in individual and family therapy, is in an excellent position to perform a psychological evaluation of every mastectomy patient.2%! The social worker’s findings and recommendations then can be shared with other team members so that an individual medical and psychological treatment plan can be developed that will attempt to meet the needs of each patient. An ideal treatment team consist of physicians, nurses, a social worker, a member of the clergy (when appropriate), a physical therapist, an oc- cupational therapist, and a psychologist or psy- chiatrist. Other professionals can be consulted as needed. To avoid confusion and possible conflict, one member of the team should be responsible for coordinating, managing, and directing the team. A number of hospitals schedule meetings once a week so that all team members can review a pa- tient’s progress. During these meetings, all mem- bers of the health care team share what they have been observing and learning about a given patient, including the family conflicts she may face, possi- ble hospital discharge problems that might arise, and other observations of the patient’s reactions to her diagnosis and treatment. In general, meet- ings of this sort are used to share information and to help prevent some of the crises that might otherwise arise without the intervention of one or more team members. Another important advantage of team medicine is that team members can provide each other with emotional support. One purpose of team meetings is to share individual feelings and concerns with other members of the team so that any problems can be discussed and worked out before they cause friction within the team or reduce its effective- ness. After the death of a patient, a meeting of the Ww The earlier a patient begins to work with health care specialists trained to help her deal with the physical and emotional problems associated with breast cancer, the more effectively she is likely to adjust to and cope with her situation. team also may be appropriate to work through the accumulated frustrations of that case. Because the team approach is a relatively new concept in medicine, there may be problems of transition and adjustment. Some surgeons are not accustomed to sharing responsibilities for patient care with other health professionals. Nurses, ther- apists, and social workers often differ in their philosophies and methods of patient care, even though they all are working toward the same goals. If this is the case, discussions are necessary to arrive at a common plan in which the patient can participate and from which she can benefit. One social worker expressed these feelings about effective team work: “If we social workers have as a goal the teaching of people to be more comfor- table with their feelings and freer in expressing them so that they might learn and grow to better functioning with a diagnosis of cancer, we had better be doing the same with ourselves — social workers and all team members — without cancer. "26! 91 Breast Cancer Programs and Resources Information and Education Programs he mastectomies of Betty Ford and Happy Rockefeller in 1974 brought the subject of breast cancer out of the closet. Mass media cover- age of these ironically coincidental breast cancer cases resulted in record numbers of women visit- ing their physicians for breast examinations. Also in the fall of 1974, the breast cancer screening program sponsored by the Health Insur- ance Plan of Greater New York was under way. (See Detection.) Part of the evaluation of the HIP program was designed to measure participation of the plan’s members in the screening program. This evaluation permitted measurement of participa- tion in the screening before, during and after the Ford-Rockefeller mastectomies. During this period in September and October of 1974, the mass media focused on breast cancer, and participation in the screening program increased significantly among all groups of women. As media attention decreased, however, participation in the screening program declined to previous levels.” Public awareness of breast cancer has increased in the last several years, and women’s fears may have been allayed as they have become aware of the trend toward lesser surgery, the two-step pro- cedure, and the increasing practice and safety of breast reconstruction. Women’s groups, national health organizations, and the media have been largely responsible for this increased knowledge and attitude change. Much more needs to be done. As discussed in earlier chapters, women’s fears of breast cancer may result in their avoidance of breast self-exami- nation, denial of symptoms when they occur, and delay in seeing a physican for detection and diag- nosis. Effective public education programs are needed to describe advances in all aspects of breast cancer so that women’s fears about breast cancer will be reduced. In addition, such programs can teach both men and women about breast exami- nation, that most breast abnormalities are benign, and that early breast cancer diagnosis and treat- ment can save lives. Information and education programs also are necessary to help the breast cancer patient and her family cope with the emotional trauma that usually accompanies breast cancer diagnosis, treatment, and rehabilitation. PUBLIC KNOWLEDGE AND ATTITUDES The effectiveness of the majority of public infor- mation and education programs about breast cancer has not been measured adequately. The survey performed by the Gallup Organization, Inc. in 1973, “Women’s Attitudes Regarding Breast Cancer,” was commissioned by the American Cancer Society (ACS); it was the first comprehen- sive study of its kind.”® The survey data have been widely used to develop public information and ed- ucation programs on breast cancer. In 1976, the American Cancer Society again commissioned the Gallup Organization to survey women about breast cancer. This study, however, focused only on breast self-examination (BSE) as part of a larger survey of public perceptions of various cancer detection practices. The study indi- cated that the percentage of adult women who report that they regularly examine their breasts had increased 6 percent since the 1973 study — from 18 percent to 24 percent.’’ In 1977, the American Cancer Society released the results of a study comparing the effectiveness of alternative breast cancer public education pro- grams. The researchers questioned 5,533 women before, immediately following, and six months after their participation in cne of seven breast cancer public education programs which varied in content and type of spokesperson. Results of the study indicate that the level of women’s knowledge about breast cancer increased as a re- sult of exposure to the programs, and that the programs helped to reduce rather than increase women’s fears about breast cancer. All programs 95 used were effective in increasing BSE performance among women of all ages as well as improving women’s sense of confidence about doing BSE. The effectiveness of the standard BSE education program was improved when women participated in an over-the-clothing breast self-examination in a group setting.'5* The study also found that former breast cancer patients, trained laywomen, and nurses were as successful as physicians in persuading women to do BSE and in improving women’s attitudes toward BSE practice. Former breast cancer pa- tients appeared to be more empathetic toward program participants and more successful than other instructors in convincing women that BSE was easy to do and in helping to dispel any sense of embarrassment about doing BSE.!5* To be effective, breast cancer information and education programs must utilize current, com- prehensive information for program planning and evaluation. For example, the mastectomies of Betty Ford and Happy Rockefeller occurred after the comprehensive 1973 Gallup study was released. In order to determine how media coverage of these mastectomies and other events have affected attitudes, a new survey has been commissioned by the National Cancer Institute to provide base- line data of public knowledge, attitudes, and be- havior regarding breast cancer. The survey will update the 1973 Gallup study as well as provide the first in-depth examination of black and His- panic women’s and black, Hispanic, and white men’s attitudes toward breast cancer. Men’s per- ceptions and awareness of breast cancer then will be compared with the attitudes of their female partners. This comparison will help provide an understanding of the degree to which men’s atti- tudes play a role in their partners’ detection prac- tices, their willingness to see a physician if a symptom appears, and their methods of coping with breast cancer. The survey questionnaire allows for periodic updates. Results of the survey are expected in 1979. MASS MEDIA COVERAGE To distinguish it from the more focused area of public education, public information is defined as any material that is presented to the public via the mass media — television, radio, newspapers, and magazines. The effectiveness of public information efforts regarding breast cancer is very difficult to judge. Public service announcements (PSAs), television news and documentaries, other television and 96 radio programs, and newspaper and magazine arti- cles all have covered the topic with varying degrees of accuracy and emphasis. Although public re- sponse to such material has not been measured, frequent and continued coverage of breast cancer maintains public awareness of the subject. Public Service Announcements. The American Cancer Society produces public service announcements about breast cancer for broadcast by television networks and local stations. Because free public service time is scarce at the national level, PSAs are given more play by local stations during ACS breast cancer information campaigns. No uniform assessment appears to have been made of the number of times specific spots were aired, the dates or times of day they appeared, the approxi- mate number of people who saw them or the audience to whom they were addressed; their over- all impact, therefore, cannot be evaluated. Such PSAs take many forms, ranging from those that do not specifically mention cancer to quite ex- plicit messages both mentioning cancer and show- ing bare breasts. A PSA produced by the Florida Division of the American Cancer Society presented a demonstra- tion of BSE on a bare-breasted woman. The PSA was tested by the National Cancer Institute’s Health Message Testing Service for message effec- tiveness and audience reaction toward seeing bare breasts on television. Some 84 percent of the test group felt the PSA performed a ‘‘useful public service; 59 percent found it “very educational;” and 57 percent believed it was ‘suitable for airing any time of day.” Fifty-four percent of the view- ers felt the bare-breasted spot was “not at all of- fensive,”” judging it suitable for a general audience. Only 30 percent felt the PSA “would have been just as effective without showing a bare breast.’*!8® The response to the spot, which was distributed and widely aired in Florida, was considered excel- lent: only one station refused to broadcast it. Subsequently similar PSAs showing bare breasts have been developed and used. Programming. Television and radio talk shows, doc- umentaries, and segments of news programs are more prevalent vehicles for breast cancer messages than public service announcements. Following is a listing of some radio and television programs that focused on breast cancer: eo “Eyewitness News’ at KABC-TV in Los Angeles spent 10 minutes during each even- ing’s newscast for a week discussing various aspects of breast cancer. Response to the program was not measured, although the station referred callers to the Cancer Informa- tion Service. At the suggestion of a breast cancer patient, WTOP-TV in Washington, D.C., produced a segment of its program, ‘“Everywoman,” dealing with various aspects of breast cancer, from detection and surgery through recon- struction. Special emphasis was placed on the two-step procedure, chemotherapy, recon- struction, and follow-up procedures after mastectomy. The station considered the re- sponse to the program overwhelmingly favor- able. The program first ran May 22, 1977, and was repeated October 22, 1977. Five segments of the ‘“Everywoman’’ program were then used on another WTOP-TV day- time program, “Morning Break,’ which focused on breast cancer on five consecutive mornings. Physicians, breast cancer patients, and others involved in local breast cancer programs were guests. Radio station WPR in Washington, D.C., pro- duced a one-hour talk show with two local women who established rehabilitation classes for breast cancer patients and with three Reach to Recovery volunteers. An interview with reporter Betty Rollin followed. NBC’s “Today” program, as part of its regu- lar segment on health, featured Dr. Art Ulene teaching BSE on a bare-breasted woman on May 4, 1977. NBC affiliate KNBC-TV in Burbank, California, received 15 letters con- cerning the program, only one of which was negative. The network, however, received 36 letters — 16 pro and 20 con.?%’ NBC’s daytime panel discussion, “Not for Women Only,” devoted a week in February 1977 to discussing various aspects of breast cancer with former patients. On May 31, 1977 “The MacNeil/Lehrer Re- port,” a syndicated news and issues program produced by PBS, featured a discussion by two breast cancer specialists, Dr. C. D. Haagensen and Dr. Bernard Fisher, about the necessity of radical mastectomy. A 30-minute documentary on breast cancer treatment following surgery appeared on “A Woman Is,” produced by an NBC affiliate and aired in October 1976. “Why Me?,” a television program produced by the American Cancer Society which dealt with breast cancer and breast self-examina- tion, was televised nationally on PBS on November 24, 1975. The analyses, jointly sponsored by the American Cancer Society and the National Cancer Institute, measured 97 immediate audience reaction to the program as well as any actions taken as a result of in- formation presented during the broadcast. The quasi-documentary attracted an above- average number of viewers for such a pro- gram, including a broad cross-section of women. Reactions to the program were generally favorable and 72 percent of those interviewed felt it was ‘‘very helpful.” While the program increased women’s knowledge about breast cancer, a three-month follow- up survey revealed that the percentage of women viewers who were practicing BSE was no higher than that of non-viewers. How- ever, those who were practicing BSE before the program and who saw the program con- tinued to do so. Panel discussions which followed the program were judged to be successful in answering women’s questions and fears about breast cancer, but not in changing attitudes or behavior.!>® The pro- gram was broadcast later locally and fol- lowed-up by a question and answer session. ® Norman Lear’s “All in the Family’ aired “Edith’s Christmas Story” in December 1973, depicting Edith’s and her family’s re- action to her discovery of a breast lump. Response to the program was mixed, with letters running 10 pro and 20 con. The major objection to the program was not its subject matter, but the time of year at which it was shown. (Each letter received represents the feelings of 25-35 people.)?* e Jennifer Brookes, a major character on the CBS daytime drama “The Young and the Restless,” discovered a lump in her breast and, after much contemplation, underwent a mastectomy. The script followed her through her 6-month follow-up examina- tion which showed no signs of cancer recur- rence. Public response to the program was considered “very favorable.” Fan mail for Jennifer (actress Dorothy Green) tripled.*3 eo On November 8, 1978 CBS-TV aired a made- for-television movie based on Betty Rollin’s book First You Cry. Mary Tyler Moore starred as a television writer with breast cancer. Print Media. The National Cancer Institute con- ducted a study of news coverage of cancer in the top 50 major daily newspapers over a 3-month period in 1977. More than 2,100 stories were analyzed. The individual news stories were studied for coverage of the major topic, the specific type of cancer (or body site) discussed, causes, risk factors, prevention, detection, treatment, and emotional aspects of the disease.!*? Results from the study indicate that stories about famous people who have cancer received the most coverage. Over 25 percent of the stories were devoted to that subject. Carcinogens and Laetrile were the next most frequent topics, accounting for another 32 percent of the stories. Mammo- graphy was the major topic of about 3.5 percent of all stories.!?3 The stories were further analyzed by their cover- age of 13 specific types of cancer. Over one-third (37 percent) did not mention a specific body site, but among those which did, breast cancer was the type of cancer cited most frequently (11 percent). Ways in which individuals could prevent breast cancer were mentioned in about one-fourth of the breast cancer stories, but early detection of breast cancer was specifically described only in about 5 percent of these articles. Furthermore, emotional factors which may affect a breast cancer patient or suggested ways to help cope with the disease were described in only 5 percent of those stories. PUBLIC INFORMATION PROGRAM PLANNING When developing an information program, the target audience must be defined, measurable ob- jectives set, and strategies established. Audience. The primary target audience (the most important group or subgroup to be addressed) for a public information program on breast cancer must first be clearly identified. For example, a primary audience may be asymptomatic and un- diagnosed symptomatic adult females aged 18 and over, and secondary audiences may be adult males and teenage females. Objectives. A program’s objectives are the steps to reaching a program’s goal, and they should be measurable. Three objectives might be considered when planning communication efforts for mass audiences ® to heighten public awareness and understand- ing of progress against breast cancer in order to encourage early treatment and improve the patients’ ability to cope with the disease if stricken ® to encourage monthly breast self-examination and urge the public to request breast examina- tion as part of routine medical examinations ® to increase public knowledge of the risk fac- tors of breast cancer Communication Strategies. A communication strategy is a plan for the information the program will transmit. For example, a strategy that progress is being made against breast cancer could include 193 98 the following messages: ® Self-examination, by palpation and observa- tion, is a simple and successful method of breast cancer detection. eo Regular physical examination by a physician is effective in helping detect breast cancer. ® Mammography is an effective detection and diagnostic device when used in appropriate circumstances. ® Increasing medical knowledge of effective breast cancer treatment methods is helping control the disease. ® Women can lead active lives following treat- ment for breast cancer. ® Advances in breast surgery make reconstruc- tion a possibility for growing numbers of breast cancer patients. Pretesting in Cancer Communications, Methods, Examples, and Resources for Improving Cancer Messages and Materials is a manual developed for health planners available at no charge through the National Cancer Institute’s Office of Cancer Com- munications. The manual provides a guide to plan- ning cancer information materials from the initial strategy session through concept development and pretesting and lists resources for professional pre- testing assistance.!3® (A list of all National Cancer Institute publica- tions and communication services is available from the Office of Cancer Communications at NCI.) PUBLIC AND PATIENT EDUCATION Public education campaigns include those con- ducted both on an individual level and in group programs in hospitals, schools, or other commun- ity settings. Both one-to-one and group education programs require a definition of the target audi- ence and the development of objectives and stra- tegies. For patient education programs, planners must identify the most appropriate times during a woman’s experience with breast cancer to provide education. Many women will confront a variety of treatment decisions, physiological and emotional changes, and some social problems at different times throughout the disease process. At various times, when decisions must be made or when in- formation and support are needed, education pro- grams can help the public and breast cancer pa- tients cope with the disease. The time periods appropriate for supplying information and support are referred to as points of intervention and have been identified as the period of time ® before detection of a symptom ® upon detection of a symptom ® at first medical evaluation ® before biopsy and possibly mastectomy (one-step procedure) e following biopsy and prior to treatment (two-step procedure) eo after surgery e after hospital discharge -- the rehabilitation period ® prior to and during adjuvant treatment(s) ® prior to and during the process of breast re- construction e throughout diagnosis and treatment for re- currence and metastasis ® throughout terminal stages of the illness Often one education program or counseling service can help women during several interven- tion points. Priorities must be set and the needs of patients during specific stages of the disease must be addressed to provide the maximum po- tential psychological and social benefits. Available materials and information/education approaches should then be identified for possible use. “Com- municating Cancer Control to the Public” provides a literature review of public communications and cancer education programs which may be helpful to program planners. 3’ The following pages summarize, by interven- tion points, the emotional and social problems encountered by breast cancer patients and present several examples of education programs that address the specific problems of each inter- vention point. (See The Psychological and Social Effects of Breast Cancer.) The materials listed represent a variety of approaches and philoso- phies; no attempt has been made to evaluate them and inclusion in this Digest does not imply endorsement by the National Cancer Institute. To inquire about materials please contact the source indicated or contact the Cancer Information Clearinghouse. (See Resources.) GENERAL EDUCATION PROGRAMS (BEFORE DETECTION) Even before any evidence of breast cancer appears, some women have mistaken ideas about breast cancer, including fears of breast loss, loss of fem- ininity, and death. And, according to the Gallup surveys, women apparently are reluctant to ex- amine their breasts since only 18 to 24 percent of all women report they practice breast self-examina- tion (BSE) monthly, even though 95 percent have heard of BSE.?’ To increase women’s practice of BSE and to allay some of the fears of the disease, several pro- 99 grams have been developed to increase women’s knowledge about breast cancer before they are confronted with a symptom of the disease. eo The National Cancer Institute has helped establish a toll-free telephone network (See Resources for listings) to answer the public’s questions about cancer. These Cancer Infor- mation Services (CIS), staffed by trained supervisors and volunteers and affiliated with Comprehensive Cancer Centers, have exten- sive, up-to-date information about cancer prevention, detection, diagnosis, treatment, and rehabilitation. The CIS offices also pro- vide information about local resources and services. CIS staff work closely with and en- courage cooperation among health profes- sionals. A 1977 study of incoming calls to the CIS offices reported that 19 percent of the calls concerned breast cancer. The most commonly asked questions about breast cancer included the following: — My doctor has recommended immediate surgery. Is this the only treatment? — My doctor is giving me (specific type) treatment. Is this the best? — I have a symptom in my breast. Is this cancer? — I have a symptom in my breast. Where can I go for diagnosis? — My doctor says I may have breast cancer. I am not satisfied with his diagnosis and would like a second opinion. Can you recommend another doctor? — Is mammography safe? — Where can I get a mammogram? — I took estrogen. Am I at risk to breast cancer? — My mother had breast cancer. Am I at risk to breast cancer? A similar telephone system in Cleveland, Ohio was developed before the federally- funded Cancer Information Services. It is also called the Cancer Information Service and was funded initially by a grant from the Junior League of Cleveland. Staffed by a trained social worker and volunteers, the Cleveland Cancer Information Service pro- vides the public with general information about cancer, assists medical professionals, offers patient counseling services, and pro- vides individual physician referrals to people who need help with cancer-related problems. A package of materials has been developed by the National Cancer Institute’s Office of Cancer Communications and is available to groups interested in conducting programs to inform and educate the public about breast cancer. The materials include this Digest; a slide-tape presentation and a pamphlet, tailor-made for specific organizations that present information about the progress against breast cancer; a poster headlined “Americans Are Living with Breast Cancer” and articles about breast cancer detection, diagnosis, and treatment for publication in organizational newsletters. The Knights of Columbus, the National Council of Catholic Women, the World Conference of Seventh- day Adventists, B'nai B’rith Women, the American Federation of Teachers. American Telephone and Telegraph, Pillsbury, PPG Industries, and the Idaho Cancer Coordina- ting Committee are among the organizations participating in the program. The materials are available to any organization for use in their public education programs. The American Cancer Society has a public education program on breast cancer avail- able to schools, corporations, unions, service clubs, and other groups interested in inform- ing students, employees, or members about breast cancer. The emphasis is on breast self- examination. The program, available through state divi- sions and local units of the American Cancer Society, features one of two different short films teaching the BSE technique, a pamphlet entitled “How to Examine Your Breasts,” and the use of a breast model so that the correct BSE techniques can be demonstrated and women may practice the exam on the model. The breast model contains lumps to simulate how a real breast lump would feel. A physician or a nurse may be involved in the instruction and to help answer questions during the presentation. Other films on breast cancer are available from the American Cancer Society. (See Resources under both American Cancer Society and Cancer Infor- mation Clearinghouse.) In 1973, 27 Breast Cancer Detection Dem- onstration Projects (BCDDP) in 29 medical institutions were established jointly by the American Cancer Society and the National Cancer Institute. Their goal is to educate the public and medical professionals about the value of periodic examinations and breast cancer detection methods and to demonstrate the value of detecting breast cancer in its early stages in asymptomatic women. The projects were structured to screen 270,000 women annually over a 5-year period. Participating physicians, nurses, and re- searchers are attempting to assess the relative 100 effectiveness of breast cancer detection methods used in combination, including pa- tient history, physical exam, mammography, and thermography. (See Detection for guide- lines on the use of mammography to detect breast cancer. For a listing of BCDDPs see Resources.) A breast cancer detection clinic in Edina, Minnesota, is modeled after the BCDDPs. The Edina clinic offers patients a breast exam, instruction in breast self-examination, a breast cancer risk assessment, and a mam- mogram, if indicated, for a fee of $60. A bimonthly public education session on breast cancer is offered without charge by the clinic. Volunteer nurses at the University of Wash- ington Hospital in Seattle, Washington, con- duct a weekly clinic to instruct women in BSE. The session includes a lecture, dia- grams, films, discussion, and a BSE demon- stration with each woman. Project H.E.L.P. (Health Education Learning Program) is a cooperative program of the University of Alabama at Birmingham Medi- cal Center, the Alabama Cooperative Exten- sion Service, and the Alabama State Depart- ment of Health. H.E.L.P. provides instruction in BSE to rural and elderly people in Ala- bama who have limited access to medical care. A flip chart with large illustrations and a pamphlet written at the fourth-grade read- ing level explain the necessity for regular breast self-examination and Pap smears. Nurses are recruited to become BSE instruc- tors by local units of the American Cancer Society (ACS) and local ACS nursing com- mittees in Texas. Following their instruction, the nurses are certified as “specialized volun- teers’ to teach BSE and must teach it to re- tain their certification. In addition to teach- ing BSE in their work settings (i.e., schools, industry, clinics, hospitals), nurses can par- ticipate in an ACS speakers bureau to pro- vide additional educational programs within the community. Similar programs are offered by other ACS Divisions. The ACS unit in Austin, Texas trains school nurses to teach BSE to teenage girls at least once prior to their graduation from high school. BSE instruction is integrated into health classes, where the curriculum allows it, and girls are encouraged to begin practic- ing BSE as a regular health habit. The instruc- tion includes a film, demonstration of BSE by the school nurse on a breast model, and a practice demonstration by the students. Because instruction in breast self-examination by a health professional appears to be the most effective teaching method, several hospitals have started programs in which nurses teach their patients BSE. ® At the LDS Hospital in Salt Lake City, Utah, a detection program using nurses to teach breast self-examination reached approximately 10,000 women patients in 1976. All hospitalized women over 18 who were emotionally and physically able to parti- cipate were included in the program. The hospital provided an inservice BSE in- struction training session to nurses, followed up with a yearly inservice session for all nurses to reinforce their teaching skills and help ensure that new information about breast cancer is provided to hospital patients. New nurses on the hospital staff are in- structed in the BSE education program as part of their orientation to hospital proced- ures. To prepare patients for their discharge from the hospital, nurses instruct women about the value, purpose, and specifics of BSE. Most of the teaching is done individual- ly, although some instruction is conducted in small groups. A pamphlet entitled “How to Examine Your Breasts,” published by ACS and distributed by its Utah Division, is given to the patient as a guide. The nurse demon- strates BSE on a breast model and then the patient practices the technique on the model. Huguley Memorial Hospital in Fort Worth, Texas, the University Hospital in Loma Linda, California, and Central Oregon Dis- trict Hospital in Redmond, Oregon have similar programs in which nurses teach BSE to women patients. Because of the success of the BSE in hospital programs described, the National Cancer Institute’s Office of Cancer Communications has developed a pilot program using nurses to teach BSE to hospitalized women over age 18. The program has been implemented in hospitals located in Utah, Idaho, and Wyom- ing owned by Intermountain Health Care, Inc. The program will be evaluated to meas- ure its effectiveness in encouraging patient practice of BSE. A related program is under- way in King’s County Hospital in Brooklyn, New York. Results of the programs’ evalua- tion will be made available to program plan- ners, health educators, and medical facilities around the country. The National Cancer Institute is funding a training program for public health nurses at the Breast Cancer Detection Center in Dur- ham, North Carolina. Participating nurses from public health clinics around the state are provided with a 2-day training session on teaching breast self-examination to clinic patients. Approximately 150 nurses have participated in the program thus far. e The Columbia Medical Plan, a health mainte- nance organization in Columbia, Maryland, offers a breast self-examination program at a minimal charge to members. The education program is taught weekly to small groups and uses films on BSE, breast cancer, and a family’s experience with breast cancer to pro- vide members with information about the disease. ® Registered nurses and Reach to Recovery Volunteers of the Santa Clara County, Cali- fornia, unit of the American Cancer Society have joined to teach people in industry, schools, and residential areas about breast cancer and to provide instruction in BSE. ® The Breast Cancer Advisory Center estab- lished by Rose Kushner, author of Why Me? What Every Woman Should Know About Breast Cancer to Save Her Life (initially entitled Breast Cancer: A Personal History and Investigative Report) provides informa- tion on all aspects of breast cancer and advice to people who may have questions about breast cancer and its treatment.'37 14° e® The NCI Speakers Bureau can provide ex- perts on various subjects related to breast cancer for conferences, educational programs, and other purposes. For information, con- tact the Office of Cancer Communications, NCI. DETECTION PROGRAMS When a woman discovers a suspicious symptom, she experiences fears of cancer, breast loss, losing her independence or her partner, and death. These fears may result in delays in seeking medical attention. At this point of detection a woman may benefit from information and support, but because of the difficulties involved in reaching a woman at this time, support programs for this intervention point are rare. ® Because of the lack of education programs available to help a woman after she has found a problem but before she has seen a physician, nurses at the Georgetown University Medical Center in Washington, D.C. started NURSUPPORT, a program to help women cope with the emotional problems they must confront after a lump is discovered. NURSUPPORT, operated by volunteer nurses, is based on the realization that sup- port and information given before diagnosis and treatment, if necessary, can significantly reduce patient fears and trauma. The pro- gram is designed to assist women from the time a possible symptom of breast cancer is discovered through the progression of the 102 disease. The nurses offer emotional support to the patient by listening to her fears. an- swering her questions, referring her to a physician at the medical center, and even walking with her into the physician’s exam- ining room if she wishes. Women also are provided with information on breast cancer and guidance regarding the treatment, re- habilitation, and reconstruction options available to them during all stages of the disease. e The M. D. Anderson Hospital and Tumor In- stitute in Houston, Texas, conducts 3- week training sessions to teach physicians’ office nurses how to detect various types of cancer. Any physician in Texas can enroll a registered or licensed vocational nurse in the program which is offered at no charge. Nurse- trainees are taught how to take detailed medical histories, identify people at high risk to cancer, and examine patients for symp- toms of various types of cancer. The nurses also take a concentrated anatomy course and spend time in the hospital’s chemotherapy and radiation services and laboratories. FIRST MEDICAL EVALUATION PROGRAMS When a woman with breast cancer symptoms visits her doctor for the first time, she may be ex- periencing a number of fears and anxieties. Many women are unaware that 80 percent of breast lumps are noncancerous and, thus, are over- whelmed by fears of cancer, breast loss, the un- known, and dying. Some women are afraid of the medical proced- ures used to determine whether their symptoms are indicative of cancer. If they are informed that their symptoms are serious enough to warrant further tests, many women react with fear, confusion, or suspicion; they may not know how to break this news to their families and friends, or may seek other medical opinions in the hope that the physician is wrong, or may feel that the physician is not telling all this is known about their condition. e To better inform these women and help allay their fears, the publications office of Parke- Davis and Company of Detroit, Michigan, has developed Benign Breast Tumors, an illu- strated book designed to help physician’s de- scribe to their patients the anatomy of the breast and the various types of noncancerous breast lumps. After reviewing the book with her physician, the patient can take home a detachable page on BSE. BIOPSY /POSSIBLE MASTECTOMY PROGRAMS The woman who undergoes biopsy and mastec- tomy in a one-step procedure may face the follow- ing problems prior to surgery: e itensified fears of breast loss, cancer, death, dying, living, and the unknown ® lack of information about her legal rights when confronted with signing the form con- senting to the removal of her breast e fear of hospitals and their procedures e lack of information about alternative treat- ments e dread of post-surgery results e lack of communication with the physician In a two-step procedure, the biopsy may be per- formed on an outpatient basis under local or gen- eral anesthesia, with surgery scheduled later if the biopsy report shows cancer to be present. In other cases, the patient may be admitted to a hospital for a biopsy under general anesthesia, but the surgery may be performed hours or days after the results of the biopsy are known. Women who undergo two-step procedures may suffer many of the same fears and anxieties ex- perienced by women who have one-step biopsy/ mastectomy, but the hours or days between biopsy and surgery are agonizing for some women. They may feel anxiety about the delay, a sense of urgency, and fear that the diagnosis is an error and that another physician must be contacted to con- firm or refute the diagnosis. The patient may feel panic if she does not know how to arrange or is afraid to request that another physician be asked for a second opinion. Other women welcome the time between biop- sy and mastectomy as an opportunity to come to terms with their impending breast loss, consider seeking a second medical opinion, weigh alterna- tive treatments, consult with a plastic surgeon to consider breast reconstruction, and arrange for sick leave and/or domestic help. Programs to help breast cancer patients cope from the time they are diagnosed are rare. ® Vista Nueva is a community information, education, and counseling center associated with the Kaiser Permanente Medical Care Program in Santa Clara, California. The center offers women with breast cancer or its symptoms and their families a variety of services, including prebiopsy education ses- sions with a nurse and a Reach to Recovery 103 Volunteer, information about mastectomy, rehabilitation, and adjuvant therapy, and discussion groups for women, their partners, and children. Vista Nueva also supplies wom- en and their families with information on additional medical care available through the Kaiser medical care system, including physi- cal therapy, social services and home care, as well as advice on community resources such as domestic help, legal assistance, employ- ment rights, public health and welfare pro- grams, and private assistance agencies. Nurses at Immanuel St. Joseph’s Hospital in Mankato, Minnesota, recognize the anxiety women experience during this time. With the help of patients hospitalized for biopsy and mastectomy, the nurses have developed a “Biopsy — Possible Mastectomy” photo notebook and teaching manual for their own use. The book describes the hospital rules and medical procedures involved in surgery, and contains pictures of biopsies, bandages, a mastectomy scar, and breast cancer patients participating in daily activities after their mastectomies. Patients are given the book upon admission and keep it at their bedsides for referral at their convenience. Reach to Recovery volunteers of the Santa Clara County, California, unit of the Ameri- can Cancer Society often visit women prior to mastectomy to provide the patient with support and a positive role model. Other ACS units around the country also are be- ginning to institute such presurgical Reach to Recovery programs. IN-HOSPITAL PROGRAMS AFTER SURGERY After mastectomy, a woman may experience a wide range of emotions including anger and bitterness fear or denial of cancer denial of breast loss or mourning of lost breast fear of living without the breast anxiety over appearance — leaving the hos- pital without a prosthesis fear of partner’s reaction /rejection fear of viewing her body relief that surgery is over relief, if prognosis is good fear, if positive nodes indicate more treat- ment is necessary frustration at being unable to express feelings with a nurse, physician or family member The American Cancer Society’s Reach to Re- 104 covery program uses women who have under- gone mastectomy to help other breast cancer patients with their intitial adjustment. The volunteers’ goals are to emphathize with the patient’s problems, to let the patient know many women share her problems related to breast loss, and to provide a role model for the patient. Following surgery, the patient, physician, or surgeon can request that a trained ACS volunteer visit the patient in the hospital. The volunteer will demonstrate exercises that can be done when authorized by a physician and provide the patient with a Reach to Re- covery Kit containing a booklet, exercise materials, a lightweight breast form, and a bra. Reach to Recovery also provides the husband and family members with a letter that attempts to help them understand some of the problems the patient might be experiencing. e Baptist Hospital in Miami, Florida uses an alternative approach. Two registered nurses who work in the hospital and have had mas- tectomies visit patients after surgery to help them begin to deal with their breast loss. The nurses also help patients learn appropriate exercises, teach them BSE, and discuss vari- ous types of prostheses. Two or three weeks after patients leave the hospital, nurses tele- phone them to check on their progress. eo Stanford University Medical Center’s Depart- ment of Family, Community and Preventive Medicine in Palo Alto, California, provides mastectomy patients with support and self- help groups and conducts individual and group counseling for patients, their partners, and other family members to help them cope with their fears and anxieties about breast cancer. ® The Post-Mastectomy Rehabilitation Group at Memorial Sloan-Kettering Cancer Center in New York City (See Rehabilitation) pro- vides a comprehensive rehabilitation program. REHABILITATION PROGRAMS AFTER HOSPITAL DISCHARGE After leaving the hospital the woman still has many adjustments to make which may include e accepting breast loss concern over appearance restoring relationships with family and others financial concerns continuing the physician-patient relationship returning home, to work, and into social circles reestablishing her self-image resuming sexual activities informing others of her mastectomy purchasing a prosthesis The following programs provide an example of the support currently available to breast cancer patients after they leave the hospital: Four to twelve weeks after the breast cancer patient treated by mastectomy has been dis- charged from Memorial Sloan-Kettering Cancer Center in New York City, she is in- vited to join a support group which meets for eight weekly sessions. Unlike the Post-Mastec- tomy Rehabilitation Group whose member- ship often varies as patients are discharged, this ongoing group has a constant member- ship that provides a solid base for group therapy. Many mastectomy rehabilitation groups are offered by organizations that understand a woman’s needs after breast surgery and at- tempt to meet them. Exercise, swim, and dis- cussion classes for mastectomy patients are sponsored by the 92nd Street Young Men’s and Women’s Hebrew Association in New York City, the Jewish Community Center in Washington, D.C., and the Young Women’s Christian Association (Y.W.C.A.). The Y.W.C.A. sponsors a program called E.N.C.O.R.E. (Encouragement, Normalcy, Counseling, Opportunity, Reaching out, Energies revived) around the country. “Re- laxation, Exercise and Dance Movement” classes for breast cancer patients are also held by CanSurmount, a program offered by the Colorado Division of the American Cancer Society. Mastectomy patients have created groups or services to fill their unmet needs. Bosom Buddies in Miami, Florida, a group estab- lished by a breast cancer patient and the Mental Health Association of Dade County, Inc., helps other breast cancer patients deal with the psychological aspects of rehabilita- tion. Monthly meetings held under the guid- ance of a social worker allowed the women to discuss problems the women may have. The groups are loosely structured, and the direction of each group is set by its members. Mastectomy Counseling for Men, in San Jose, California, was started by a professor of ed- ucation who, after his wife’s mastectomy, realized that men also suffer fear and pain during their wives’ battles with breast cancer. The group recruits volunteer husbands of 105 breast cancer patients to counsel others. Re- ferrals are made from a number of commun- ity agencies, physicians, Reach To Recovery volunteers, and the American Cancer Society. From information obtained during the re- ferral interview, husbands are matched with an appropriate husband-counselor. The men meet socially over lunch or with their wives to discuss fears, share experiences, and deal creatively with the problems that confront many husbands. e S.H.A.R.E. (Self-Help Action and Rap Ex- perience For Post-Mastectomy Women) is a weekly postmastectomy group conceived and led by a breast cancer specialist in New York City. Although originally intended to be a discussion group about emotional and physical problems encountered after mastec- tomy, the group also focuses on social issues, such as job discrimination, that affect breast cancer patients. ® The Santa Clara County, California, unit of the American Cancer Society offers monthly Mastectomy Recovery Seminars on such topics as “Exercise and Function of Arm and Shoulder After Treatment,” “Chemotherapy — Its Uses and Trends in Breast Cancer,’’ and “Single Persons and Couples Sharing Thoughts and Reactions to Breast Surgery.” ® The “At-Home Rehabilitation Project’ of the Cancer Center, Inc., in Cleveland, Ohio offers services to cancer patients in several hospitals. A team of professionals work to- gether on an at-home basis to meet the physical, emotional, social, vocational, and educational needs of the mastectomy pa- tient and her family. The National Cancer Institute has funded the program as a demonstration project for 3 years. ADJUVANT TREATMENT PROGRAMS Some women who undergo radiation therapy or chemotherapy after their mastectomies are con- stantly reminded of their fears of cancer and death. They may interpret the need for such ther- apy as a sign that their condition has worsened or that they have a particularly virulent type of breast cancer. In addition, many women experi- ence physical side effects from radiation or chemo- therapy such as pain, skin irritation, fatigue, nausea, listlessness and temporary hair loss, as well as emotional problems that may include nervousness, depression, and irritability. These symptoms can arouse fears of long-term side effects and doubts about the effectiveness of treatment. As a result of their mastectomies and therapy regimens, breast cancer patients often experience financial and employment difficulties, and family problems. In addition, they may be unable to per- form routine activities because of treatment side effects. Supportive members of a hospital health care team who understand the medical and psychologi- cal problems of adjuvant therapy can be available to help patients cope with chemotherapy or radia- tion. They can provide the patient with informa- tion on why and how the treatment is effective, the intricacies of the machinery and techniques in- volved, and the reasons for specific side effects the patient can anticipate. Because patients may be afraid of adjuvant ther- apy equipment, some hospitals brighten-up and decorate treatment rooms by hanging mobiles or large prints (to minimize the size of the machinery), nickname the machinery, or provide the patient with music or conversation through headphones. ® The Georgetown University Medical Center in Washington, D.C. provides patients who are undergoing radiation or chemotherapy with a booklet explaining why such treatment is needed and how it affects a patient. ® Chemotherapy and You is a booklet written by the Sidney Farber Cancer Institute to ans- wer some of the questions patients undergo- ing chemotherapy may ask. The booklet can be obtained free from the Office of Cancer Communications, National Cancer Institute. ® A Guide to Good Nutrition During and After Chemotherapy and Radiation provides dietary information and menus for patients undergo- ing chemotherapy and radiation therapy. The book was prepared by the Fred Hutchinson Cancer Research Center, Medical Oncology Unit, Dietary Department, Seattle, Washing- ton 98104. ® The Michigan Cancer Foundation has devel- oped a pamphlet for patients undergoing radiation treatment entitled Radiation Ther- apy: How It Can Help You. The pamphlet provides information about radiation treat- ment, describes what the patient can expect while undergoing treatment, and provides guidance for skin care and diet. RECONSTRUCTION PROGRAMS Women who are considering undergoing breast re- construction often have unrealistic expectations about the cosmetic benefits that can be obtained and thus are disappointed when their new breast does not closely resemble their natural one. Some women do not understand the complexity of the lengthy reconstruction process and are fearful and anxious about undergoing additional surgery. Many surgeons and plastic surgeons spend time discussing reconstruction with their patients prior to mastectomy and again prior to reconstruction. In these discussions, the surgeon attempts to de- termine the woman's reasons for undergoing the operation, makes sure she understands the steps involved in the process, and shows her photographs or reconstructed breasts so she will have a realis- tic idea of what she can expect. eo If mastectomy patients at the Stanford Uni- versity Medical Center in Palo Alto, Califor- nia are interested in reconstruction, they are given the opportunity to see a film about re- construction which was produced by a recon- structive surgeon primarily for professional education. The patients are also given print- ed information about breast reconstruction as part of the hospital’s patient support and counseling program. eo AF.T.E.R. (Ask a Friend to Explain Recon- struction) was started by several reconstruc- ted breast cancer patients in New York City who felt women should know about the op- tion of breast reconstruction. A.F.T.E.R. puts women who are interested in learning about reconstruction in touch with women who have had reconstructive surgery. A pam- phlet, “Liking Yourself Again” also is avail- able for anyone interested. RECURRENCE, METASTASIS, AND AD- VANCED ILLNESS PROGRAMS The patient with symptoms of recurrence, metas- tasis, or terminal illness relives many of her earlier fears about cancer, treatment, and death. Her in- creased anxiety can cause her to deny her sym- toms and delay seeking medical attention. The patient with evidence of recurrence or metastasis may be reluctant to maintain contact with her physician because such communication reminds her of her condition or because she is concerned about increased medical costs. When the cancer patient faces death, her feel- ings may progress from initial fear through anger, denial, bargaining with a superior being for more time, depression, and, finally, acceptance. Most patients fear dependence and the financial burdens placed upon family members by their impending deaths. (See Coping with Terminal Illness.) The patient’s family also endures considerable fear, pain, and anticipated bereavement when she reaches the terminal stage of her illness. Both pa- 106 tients and their families need help in coping with death and dying. Many counseling services are available to help patients and their families cope with recurrent and metastatic disease and, ultimately, the terminal stages of illness. ® One such individual and group counseling service is offered by the Stanford University Medical Center’s Department of Family, Community and Preventive Medicine. Fund- ed by the American Cancer Society, the pro- gram provides help to the patient, her hus- band or partner, family members and others involved with the patient and her illness. ® Make Today Count is a nonprofit organiza- tion for terminally ill patients, their families, and health care professionals. Local chapters around the country meet to discuss and try to resolve the problems that accompany a life-threatening disease. Meetings are infor- mal and meeting places vary from city to city. The national office in Burlington, Iowa 52601, can provide information about chap- ters throughout the United States. ® The St. Francis Institute in Washington, D.C., provides patients and their families with in- dividual and group therapy to help them cope with the emotional aspects of their illnesses and death. Some of the services the Institute offers include a mastectomy group, a crisis intervention center for both ‘“walk-in‘ and “call-in” clients, and funeral and death pre- planning. In addition, the center provides consultation and training for physicians, clergy, lawyers, nurses, funeral directors, social workers, and others involved in meet- ing the needs of terminally-ill patients and their families. ® Cancer Care, Inc. is a voluntary service agen- cy providing a variety of support services to advanced (or terminal) cancer patients and their families. The services range from finan- cial counseling to assisting with planning for home care of the dying patient. Many of the services provided through Cancer Care, Inc. are similar to the services of a hospice. (See Resources.) The hospice concept is an approach to provid- ing care for terminally-ill patients and their fami- lies. The core of this country’s hospice concept is home care for the patient, closely coordinated with health professional services. Surrounded by favorite possessions and family members and made comfortable by ‘‘as needed’’ pain control meas- ures, the dying person can face death with dignity. Hospice facilities may take several forms: an auto- nomous unit, a converted wing of a hospital, or a hospital-based team. e Hillhaven Hospice in Tucson, Arizona, is the first free-standing facility in this country. The 39 bed hospice provides a variety of ameni- ties to its patients: around-the-clock visiting hours, a communal kitchen where patients can cook, and even Wednesday night wine and cheese parties. Patients are encouraged to bring, decorate (and furnish) their rooms with treasured possessions brought from home and to contribute to the hospice newsletter. The facility is planning a home care program and expansion plans include more rooms for patients and for couples.?3 eo Hospice, Inc. in New Haven, Connecticut, is awaiting completion of construction of its inpatient building to supplement its current home care program. The finished facility will allow family members to leave patients for a few days or during working hours. Hos- pice, Inc. was begun in 1971 under a grant from the National Cancer Institute and is in- tended as a model for other communities and as a center for the teaching and study of terminal care in the United States.!*! ® A combination home care/inpatient program has been developed at St. Luke’s Hospital Center in New York City. Hospice team mem- bers (a medical director, clinical nurse spe- cialists, a social worker, staff psychiatrists, consulting psychiatrist, and a chaplain) func- tion mostly in a consulting capacity, as the patient’s physician usually maintains prim- ary care responsibility. Hospice inpatients are allowed certain exceptions to hospital regulations, i.e., unlimited number of visitors around the clock, walks on the grounds if accompanied by a hospice team member.?!° ® The Riverside Hospice in New Jersey demon- strates yet another variation; it is a free- standing facility, but is legally an affiliate of Riverside Hospital. Upon physician referral, the hospice team works in coordination with the personal physician and the primary care person responsible for patient care.?!? ® The Association of Community Cancer Cen- ters has sponsored national and regional pro- grams on the hospice movement. The pro- grams feature speakers from existing hospices around the country and promote discussion of major issues relative to the development and funding of hospices. PROFESSIONAL EDUCATION PROGRAMS Programs are also available to help health profes- sionals cope with the strains of caring for cancer 107 patients and to provide them with the most cur- rent information on treatment and patient care. ® The Oncology Nursing Program, administered by the Colorado Regional Cancer Center, Inc., in Denver, Colorado instructs nurses in the medical, social, and psychological aspects of cancer and prepares them to communicate with patients, their families, and other health professionals involved in patient care. The program also provides instruction in the de- velopment of teaching aids and program planning. ® The New York Metropolitan Breast Cancer Group is composed of surgeons, radiation therapists, chemotherapists, immunologists, and other medical specialists who are working toward the control of breast cancer by shar- ing clinical and research techniques. The group holds monthly scientific meetings and annual symposia, has developed workshops for health professionals, and has a speakers’ bureau for community education. ® Nurses in the oncology ward at the LDS Hos- pital in Salt Lake City, Utah, are given the opportunity to work one day a month in a physician’s office outside the hospital. This respite from the daily pressures of caring for cancer patients provides the nurses with a break from their routines and fresh perspec- tives on their work. ® The Breast Cancer Demonstration Project of the Dartmouth-Hitchcock Medical Center in Hanover, New Hampshire, and the Fox Chase Cancer Center in Philadelphia, Pennsylvania, have developed booklets containing nursing guidelines for the care of mastectomy pa- tients. The guidelines are designed to educate nurses about the medical and psychological aspects of breast cancer detection, diagnosis, treatment and rehabilitation so that they can take a more active role in their patients’ med- ical care and provide emotional support to patients and their families. ® Psychosocial rounds held for oncology fel- lows at Georgetown University Hospital in 108 Washington, D.C., consist of weekly group sessions led by a social worker and a psychi- atrist. These sessions provide an appropriate outlet for the stresses and anxieties associ- ated with an emotionally draining profession. They also serve as excellent teaching labor- atories for learning the ramifications of both doctor-patient and intrastaff relationships. Similar structured methods of handling stress, either in groups or on a one-to-one basis, can pre- vent staff members from becoming “burned out,” a common occurrence among people who care for cancer patients. ® The National Cancer Institute has compiled a bibliography for the health professional who may be interested in additional reading material about breast cancer. The Psycho- logical Aspects of Breast Cancer: An An- notated Bibliography Relevant to Interven- tion Design'® can be obtained through NCI’s Office of Cancer Communications. ® Another method of improving the handling of certain cancer cases and the quality of care in a hospital is the tumor board. The tumor board provides a forum for members of the health care team to discuss interesting cases and, in a constructive manner, outline the var- ious diagnostic and treatment modalities which would be in the patients best interest. ® A Bibliography of Educational Materials on Breast Cancer for patients and the public is being developed by the Cancer Information Clearinghouse. To obtain a free copy of the bibliography contact Rose Mary Romano at the Office of Cancer Communications. ® Coping With Cancer is a reference and plan- ning guide for health professionals which has been developed by the Office of Cancer Com- munications. The book provides a synthesis of available research and programs dealing with the psychosocial aspects of cancer. To obtain a free copy contact the Office of Can- cer Communications. Resources M any organizations around the country offer a wide variety of services and programs to as- sist the interested public, breast cancer patients and their families as well as physicians and health educators. These include patient support groups, detection programs, patient care and clinical re- search facilities, information and education serv- ices, and financial and legal assistance programs. Because this field is fast changing, a central re- source that may be of value to many health care professionals and others interested in cancer is the Office of Cancer Communications at the Na- tional Cancer Institute. Besides information on NCI-funded activities on all aspects of cancer, the Office of Cancer Communications handles news media and public inquiries; operates the Cancer Information Clearinghouse, a national toll-free telephone information service, and a Speaker’s Bureau; distributes free publications to health professionals and the general public; provides information program planning assistance; pro- duces research program reports; and generally is aware of new programs and resources as they be- come available. For further information, write or call the Office of Cancer Communications, Na- tional Cancer Institute, Bethesda, Maryland 20205 (301) 496-6631. SUPPORT SERVICES Within the past few years, many services have sprung up around the United States in response to women’s health needs. The programs and focuses of these groups vary considerably ranging from total health management to services and support for women who have had mastectomies. The emphasis on breast cancer varies from group to group, depending on the ages of and needs ex- pressed by the members, but most groups seem flexible enough to adopt new programs as the need arises. The Information and Education chapter of this Digest provides a sample of the range of services offered by such organizations in the hope that these will provide ideas, background, and refer- ences for those interested in starting their own groups or programs. Because of the large number of such organizations, a complete listing of all existing groups is not feasible. Community groups and services can be located by contacting local units of the American Cancer Society, local med- ical societies, hospitals, and Cancer Information - Service (CIS) telephone networks. Many leaders of existing groups and potential program leaders are enthusiastic volunteers who have no professional experience. They can enhance and add credence to a program if they are provided with additional education and training. Health pro- fessionals can provide valuable assistance to these groups by suggesting or implementing programs and providing additional training to volunteers and other staff. Program Evaluation. If health professionals wish to use or refer patients to a group that offers pro- fessional counseling and support services, it is im- perative that they have a means of evaluating the organization’s services. The following questions can help them obtain a fairly complete picture of an organization’s activities and its value to women with breast cancer problems: ® Does the organization have any specific pro- grams directed toward breast cancer and re- lated disorders and diseases? e What programs are offered? — breast self-examination instruction — referral services for professional psycho- logical or psychiatric help — information and support programs to help women learn about their medical and surgical options — hospital visits to breast cancer patients by women who have had mastectomies 109 — lists of stores that carry prostheses, bras- sieres, and appropriate clothing — information about postoperative rehabili- tation exercises — telephone or personal contacts with women after surgery — programs to help the patient’s partner, children, parents — assistance in obtaining financial aid, if necessary — assistance with job, insurance, or credit discrimination problems — household services — transportation services for women who must travel for treatment — programs to assist women and their fami- lies in coping with advanced and terminal disease CONSULTING THE PHYSICIAN Another major resource for the woman with breast cancer is her physician. On the surface, this state- ment seems obvious — of course a physician will be consulted. But women (and patients in general) often neglect to ask questions of their physician and, in this sense, are not fully using a valuable re- source. Traditional awe of physicians, fear of appearing silly, trivial, or ignorant, nervousness in a medical setting, and anxiety about one’s own physical health are often powerful deterrents to asking important questions and obtaining information. The following questions are not intended to put the physician ‘“‘on the spot,” but are offered as a framework from which the patient and her family may work to phrase their own questions. Resource groups and health professionals also may find them useful in answering women’s questions. Does the physician /surgeon ® treat a large number of breast cancer patients annually? What percentage, approximately, does this procedure constitute in the prac- tice? (Note: The average general surgeon sees about 10 breast cancer patients per year; specialists average about 10 patients per week.) e advocate screening, including mammography, of asymptomatic women under age 50? ® advocate thermography for asymptomatic or high risk women? ® object to having other health professionals assist in presurgical counseling and support by giving information to patients? ® have the aspirate analyzed even if it appears to be benign? 110 ® perform only surgical biopsy? e perform biopsy and surgery in a single pro- cedure while the patient is under a general anesthesia? ® use a local anesthetic if requested by the wo- man, if surgical biopsy and treatment are separate? e routinely request an estrogen-receptor assay of the cancerous tissue? e consider treating patients by tylectomy com- bined with radiation therapy, a simple mas- tectomy, or a modified radical? ® encourage patients to get second opinions about alternative procedures? ® encourage consultation with a plastic surgeon prior to initial surgical treatment? e perform the surgery so as to make breast reconstruction possible? e recommend radiation to the armpit routinely after a mastectomy of any kind? e advocate chemotherapy following surgery if a woman has negative axillary nodes and a lateral lesion? One node? Two nodes? Medi- al lesion? e administer adjuvant therapy or refer patients to oncologists for drug treatment? ® help patients become involved in the clini- cal trials of the National Cancer Institute to compare breast cancer treatments? e refer patients to a Comprehensive Cancer Center? ® object to having patients referred to such centers? e work with any of the National Cancer Insti- tute’s Cooperative Oncology Groups to care for patients with advanced disease? ® arrange psychological counseling for patients who have difficulty adjusting to diagnosis and/or treatment, or refer patients to self- help or professional counseling and support organizations? THE AMERICAN CANCER SOCIETY The American Cancer Society (ACS) is a voluntary, nonprofit organization extensively involved in research, service, and education, which pioneered the effort to secure resources for cancer research and control. Education services are directed toward patients (Reach to Recovery), health pro- fessionals, and the public. Literature, films, ex- hibits, and special programs are furnished to inform individuals and groups of the latest meth- ods of breast cancer detection, diagnosis, treat- ment, and rehabilitation. In addition, individual ACS units occasionally offer emergency financial aid and referral services to cancer patients and their families, although no financial assistance for physicians’ fees or hospital bills is available. The type and amount of assistance vary in different localities. ACS units may also offer the following services: professional counseling sick room equipment, such as hospital beds, trapeze bars, wheelchairs, dressings and com- fort items for outpatients not eligible for this service under other coverage transportation to treatment centers for pa- tients not covered for these services by public assistance or insurance assistance in purchasing medication nursing services provided in cooperation with area visiting nurse associations homemaker services provided in cooperation with local service organizations (Because this is usually expensive, patients are generally asked to pay according to their ability.) Information regarding the type of services available in specific localities may be obtained from the ACS local units, chartered divisions (listed be- low), or the national headquarters at 777 Third Avenue, New York, New York 10017. Alabama Division, Inc. 2926 Central Avenue Birmingham, Alabama 35209 (205) 849-2242 Alaska Division, Inc. 1343 G Street Anchorage, Alaska 99501 (907) 277-8696 Arizona Division, Inc. 634 West Indian School Road P.O. Box 7761 Phoenix, Arizona 85067 (602) 264-5861 Arkansas Division, Inc. 5520 West Markham Street P.O. Box 3822 Little Rock, Arkansas 72203 (501) 664-3480/1/2 California Division, Inc. 731 Market Street San Francisco, California 94103 (415) 777-1800 Colorado Division, Inc. 1809 East 18th Avenue P.O. Box 18268 Denver, Colorado 80218 (303) 321-2464 Connecticut Division, Inc. Barnes Park South 14 Village Lane Wallingford, Connecticut 06492 (203) 265-7161 Delaware Division, Inc. Academy of Medicine Building 1925 Lovering Avenue Wilmington, Delaware 19806 (302) 654-6267 District of Columbia Division, Inc. Universal Building, South 1825 Connecticut Avenue, N.W. 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Hotel Graver Annex Building 115 Roberts Street P.O. Box 426 Fargo, North Dakota 58102 (701) 232-1385 Ohio Division, Inc. 453 Lincoln Building 1367 East Sixth Street Cleveland, Ohio 44114 (216) 771-6700 Oklahoma Division, Inc. 1312 Northwest 24th Street Oklahoma City, Oklahoma 73106 (405) 525-3515 Oregon Division, Inc. 1530 Southwest Taylor Street Portland, Oregon 97205 (503) 228-8331 112 Pennsylvania Division, Inc. 3309 Spring Street P.O. Box 4175 Harrisburg, Pennsylvania 17111 (717) 545-4215 e Philadelphia Division, Inc. 21 South 12th Street Philadelphia, Pennsylvania 19107 (215) 567-0559 Puerto Rico Division, Inc. Avenue Domenicia 273 Hato Rey, Puerto Rico 00917 (809) 764-2295 Rhode Island Division, Inc. 345 Blackstone Boulevard Providence, Rhode Island 02906 (401) 831-6970 South Carolina Division, Inc. 4482 Fort Jackson Boulevard Columbia, South Carolina 29209 (803) 787-5623 South Dakota Division, Inc. 700 South Fourth Avenue Sioux Falls, South Dakota 57104 (605) 336-0897 Tennessee Division, Inc. 2519 White Avenue Nashville, Tennessee 37204 (615) 383-1710 Texas Division, Inc. 3834 Spicewood Springs Road Austin, Texas 78766 (512) 345-4560 Utah Division, Inc. 610 East South Temple Salt Lake City, Utah 84102 (801) 322-0431 Vermont Division, Inc. 13 Loomis Street Drawer C Montpelier, Vermont 05602 (802) 223-2348 Virginia Division, Inc. 3218 West Cary Street P.O. Box 7288 Richmond, Virginia 23221 (804) 359-0208 Washington Division, Inc. 323 First Avenue West Seattle, Washington 98119 (206) 284-8390 West Virginia Division, Inc. 325 Professional Building Charleston, West Virginia 25301 (304) 344-3611 Wisconsin Division, Inc. 611 North Sherman Avenue Madison, Wisconsin 53701 (608) 249-0487 ® Milwaukee Division, Inc. 6401 West Capitol Drive Milwaukee, Wisconsin 53216 (414) 461-1100 Wyoming Division, Inc. Indian Hills Center 506 Shoshoni Cheyenne, Wyoming 82001 (307) 638-3331 Affiliate of the American Cancer Society Canal Zone Cancer Committee Drawer A Balboa Heights, Canal Zone CANCER CARE, INC. AND THE NATIONAL CANCER FOUNDATION Cancer Care, Inc. of the National Cancer Founda- tion is a voluntary social service agency which pro- vides professional counseling and planning to ad- vanced cancer patients and their families. Plans for care at home may include provision for nursing care, homemaker home-health aides, housekeepers, and other services. Direct services are provided primarily in the tri-state metropolitan region of New York, New Jersey, and Connecticut. The agencies collabo- rate with medical, health, and welfare organizations in community planning for the catastrophically ill; conduct programs of professional consultation and education, social research, public affairs, and public education on a national and worldwide basis. Cancer Care, Inc. is headquartered at One Park Avenue, New York, New York 10016. Telephone (212) 679-5700. A satellite office is at 20 Cross- ways Plaza North, Woodbury, New York, 11797. TELEPHONE INFORMATION SERVICES The Cancer Information Service (CIS) is a toll-free telephone inquiry network which provides infor- mation about cancer and cancer-related resources to the general public, cancer patients and their fam- ilies, and health professionals. CIS offices, funded by the National Cancer Institute, are affiliated with Comprehensive Cancer Centers, state divisions of the American Cancer Society, and other local health-related agencies. (These organizations are dis- cussed later in this chapter.) Several other institutions operate telephone services which provide services similar to those of the Cancer Information Service. A listing of tele- 113 phone services, by states, follows. Non-CIS offices are marked with an asterisk (*). CALIFORNIA LAC-USC Cancer Center 1721 Griffin Avenue Los Angeles, California 90031 From Area Codes (213), (714), and (805): 1-800-252-9066 Rest of California: (213) 226-2374 COLORADO Colorado Regional Cancer Center 165 Cook Street Denver, Colorado 80206 1-800-332-1850 Montana, New Mexico, Wyoming: 1-800-525-0231 CONNECTICUT Yale University Comprehensive Cancer Center 333 Cedar Street New Haven, Connecticut 06510 1-800-922-0824 DELAWARE (See Pennsylvania) DISTRICT OF COLUMBIA Cancer Coordinating Council for Metropolitan Washington 1825 Connecticut Avenue, N.W. Suite 218 Washington, D.C. 20009 Also Maryland and Northern Virginia (202) 232-2833 FLORIDA Comprehensive Cancer Center for the State of Florida Center House 1400 Northwest 10th Avenue Miami, Florida 33136 1-800-432-5953 Dade County: (305) 547-6920 HAWAII Community Cancer Program of Hawaii 1236 Lauhala Street Honolulu, Hawaii 96813 (808) 536-0111 ILLINOIS Illinois Cancer Council 37 South Wabash Avenue Suite 507 Chicago, Illinois 60603 800-972-0586 Chicago: (312) 346-9813 MAINE Maine Cancer Information Service P.O. Box 8648 Portland, Maine 04104 1-800-225-7034 MARYLAND The Johns Hopkins Oncology Center 550 North Broadway Baltimore, Maryland 21205 800-492-1444 (See also District of Columbia) MASSACHUSETTS Massachusetts Cancer Information Service P.O. Box 462 Boston, Massachusetts 02215 1-800-952-7420 MICHIGAN *Michigan Cancer Action Now Michigan Cancer Foundation Detroit, Michigan 48201 800-462-9191 (area code 313 only) Rest of Michigan: 616-833-1977 MINNESOTA Minnesota Cancer Council 2750 Park Avenue South Minneapolis, Minnesota 55407 1-800-582-5262 MONTANA (See Colorado) 114 NEW HAMPSHIRE New Hampshire Cancer Information Service 32 Bridge South Manchester, New Hampshire 03101 800-225-7034 NEW JERSEY (See Pennsylvania) NEW MEXICO (See Colorado) NEW YORK Memorial Sloan-Kettering Cancer Center 1275 York Avenue New York, New York 10021 (212) 794-7982 Roswell Park Memorial Institute Buffalo, New York 14203 1-800-462-7255 Erie County: (716) 845-4400 Physician-to-Physician (716) 845-1300 NORTH CAROLINA Duke Comprehensive Cancer Center 200 Atlas Street Durham, North Carolina 27705 800-672-0943 Durham County: (919) 286-2266 OHIO *The Cancer Center, Inc. Cleveland, Ohio 800-362-1454 (toll-free for northeast Ohio residents) Ohio State University Comprehensive Cancer Center Columbus, Ohio (614) 422-5022 PENNSYLVANIA Fox Chase Cancer Center 7701 Burholme Avenue — Fox Chase Philadelphia, Pennsylvania 19111 800-822-3963 Delaware and New Jersey: 800-523-3586 TEXAS M.D. Anderson Hospital and Tumor Institute Texas Medical Center Houston, Texas 77025 1-800-392-2040 Houston: (713) 792-3245 VIRGINIA * American Cancer Society Cancer Answer Service Richmond: (804) 359-1308 Rest of Virginia: 1-800-552-7996 WASHINGTON Fred Hutchinson Cancer Research Center 1124 Columbia Street Seattle, Washington 98104 1-800-552-7212 WISCONSIN Wisconsin Clinical Cancer Center — University of Wisconsin 1900 University Avenue Madison, Wisconsin 53705 800-362-8038 WYOMING (See Colorado) The toll free “800” telephone numbers only work within states as listed. FOR STATES NOT LISTED CALL (800) 638- 6694; (This nationwide line provides the same comprehensive information about cancer. How- ever, they usually will not have as complete local and regional resource directories as the other toll- free numbers, but may be able to refer callers to local agencies.) *Non-CIS offices 115 DETECTION PROGRAMS The Breast Cancer Detection Demonstration Pro- jects (discussed in the Detection and the Informa- tion and Education Programs chapters) have not accepted any more women into the National Can- cer Institute/American Cancer Society study since 1975. However, the centers provide breast exami- nations on a fee basis or refer women to the near- est facility where breast examinations and mam- mograms can be obtained free or at low cost. The National Cancer Institute also funds a regional network of community hospitals that pro- vide a multidisciplinary approach to diagnosis and treatment of breast cancer. These hospitals, which also provide breast examinations, are part of the Breast Cancer Network Demonstration Project. The following facilities provide breast examinations: ALABAMA Alabama Breast Cancer Project UAB P.O. Box 193 — University Station Birmingham, Alabama 35294 (205) 934-3376 or 934-5070 ARIZONA Breast Cancer Detection Project 2231 East Speedway Boulevard Tucson, Arizona 85719 (602) 626-7492 CALIFORNIA Breast Screening Center 384-34th Street Oakland, California 94609 (415) 658-8525 Breast Cancer Detection Program John Wesley County Hospital 2826 South Hope Street Room 123 Los Angeles, California 90007 (213) 748-3111 West Coast Cancer Foundation 50 Francisco Street Suite 200 San Francisco, California 94133 (415) 563-5213 116 DELAWARE Breast Screening Project 1200 Jefferson Street Wilmington, Delaware 19001 (302) 428-2113 Delaware Breast Cancer Management Program — Executive Offices Wilmington Medical Center P.O. Box 1668 Wilmington, Delaware 19899 (302) 656-5740 DISTRICT OF COLUMBIA Medical Center Cancer Screening 5125 MacArthur Boulevard, N.W. Washington, D.C. 20016 (202) 625-2181 FLORIDA Breast Cancer Detection Center St. Vincent’s Medical Center Barr Street at St. Johns Avenue Jacksonville, Florida 32204 (904) 338-3243 GEORGIA Breast Cancer Screening Project Georgia Baptist Hospital Professional Building East 315 Boulevard, N.E. Suite 516 Atlanta, Georgia 31312 (404) 481-3733 Georgia Cancer Management Network, Inc. — Freeway Office Park 1645 Tulle Circle, N.E. Suite 126 Atlanta, Georgia 30329 (404) 329-7016 HAWAII Breast Cancer Detection Center Alexander Young Building, Pacific Health Research Institute, Inc. Bishop and Hotel Streets Honolulu, Hawaii 96813 (808) 524-4411 IDAHO Breast Cancer Detection Center 215 Avenue B Boise, Idaho 50316 (208) 345-3590 IOWA Breast Cancer Demonstration Project Iowa Lutheran Hospital University and Penn Avenue Des Moines, Iowa 50316 (515) 283-5202 KANSAS Breast Cancer Detection Center Department of Surgery University of Kansas Medical Center 39th and Rainbow Boulevard Kansas City, Kansas 66103 (913) 588-6184 KENTUCKY Cancer Center — University of Louisville Foundation, Inc. Health Sciences Center Walnut and Preston Streets Louisville, Kentucky 40202 (502) 582-2211, Ext. 510 Breast Cancer Demonstration Project 601 South Floyd Street Louisville, Kentucky 40202 (502) 588-5261, Ext. 64 MASSACHUSETTS New England Medical Center Hospital 171 Harrison Avenue Boston, Massachusetts 02111 (617) 956-5000 MICHIGAN Breast Cancer Detection Center 396 West Washington Street Ann Arbor, Michigan 48109 (313) 764-1474 MISSOURI Breast Cancer Detection Project Cancer Research Center Business Loop 70 and Garth Avenue Columbia, Missouri 65201 (314) 449-3945 NEW HAMPSHIRE Hitchock Clinic Hanover, New Hampshire 03755 (603) 643-4000, Ext. 2467 NEW JERSEY Breast Cancer Detection Project Department of Surgery Room 852 65 Bergen Street Newark, New Jersey 07107 (201) 456-4128 NEW YORK Breast Cancer Demonstration Project Guttman Institute 200 Madison Avenue New York, New York 10016 (212) 830-4000 Brooklyn Breast Cancer Demonstration Network Downstate Medical Center P.O. Box 1214 450 Clarkson Avenue Brooklyn, New York 11203 (212) 270-1000 Regional Breast Cancer Program Albany Medical College 47 New Scotland Avenue Albany, New York 12208 (518) 445-5107 NORTH CAROLINA Breast Cancer Detection Project 3040 Erwin Road Durham, North Carolina 27705 (919) 383-6687 117 OHIO Breast Cancer Detection Center Logan Hall Basement Cincinnati General Hospital 234 Goodman Street Cincinnati, Ohio 45267 (513) 872-5335 OKLAHOMA Breast Cancer Center 711 East Stanton Young Boulevard Oklahoma City, Oklahoma 73104 Oklahoma Hospital’s Breast Cancer Control Network Oklahoma Medical Research Foundation 825 Northeast 13th Street Oklahoma City, Oklahoma 73104 (405) 235-8331, Ext. 460 OREGON Breast Cancer Screening Center 2222 Northwest Lovejoy Street Suite 171 Portland, Oregon 97210 (5603) 229-7292 PENNSYLVANIA Breast Cancer Demonstration Project Albert Einstein Medical Center Old York and Tabor Roads Philadelphia, Pennsylvania 19141 (215) 455-8400, Ext. 11 Breast Cancer Detection Clinic Department of Radiology Temple University Hospital 3401 North Broad Street Philadelphia, Pennsylvania 19140 (215) 221-4206 Breast Cancer Detection Center Hill Building Second Floor, Room 430 3515 Fifth Avenue Pittsburgh, Pennsylvania 15213 (412) 624-2671 Fox Chase Cancer Center The American Oncologic Hospital Central and Shelmire Avenues Philadelphia, Pennsylvania 19111 (215) 722-1900, Ext. 302 RHODE ISLAND Breast Cancer Detection Project Multiphasic Screening Center 593 Eddy Street Providence, Rhode Island 02902 (401) 277-8201 TENNESSEE Vanderbilt Breast Cancer Detection Center 110 Baker Building 110 - 21st Avenue South Nashville, Tennessee 37203 (615) 322-3495 TEXAS Breast Cancer Detection Center of St. Joseph’s Hospital 2000 Crawford Houston, Texas 77002 (713) 659-8626 VERMONT University of Vermont College of Medicine Burlington, Vermont 05401 (802) 656-2563 WASHINGTON Breast Cancer Detection Center 1323 Spring Street Seattle, Washington 98104 (206) 322-0500 WISCONSIN Breast Cancer Detection Center 8700 West Wisconsin Avenue Milwaukee, Wisconsin 53226 (414) 257-5200 CANCER CENTERS Comprehensive Cancer Centers. Comprehensive Cancer Centers are specially designated institutes of ex- cellence funded in part by the National Cancer Institute. The centers conduct a broad range of scientific research and develop and demonstrate methods of cancer prevention, diagnosis, treat- ment, and rehabilitation. Patients accepted for treatment are offered complete cancer care by physicians working in the centers. Comprehensive Cancer Centers are noted in the listing of cancer centers with a single asterisk (*). 118 Community-Based Cancer Control Programs. The National Cancer Institute funds several Commun- ity-Based Cancer Control Programs. Creation of these programs was based on the conviction that cancer patients can be most effectively and ef- ficiently cared for if local resources are combined in a cooperative effort. Maximum use is made of community physicians, clinics, hospitals, and other local resources to prevent, detect, diagnose, treat, rehabilitate, and provide continuing care for cancer patients. Community-Based Cancer Control Programs are noted in the listing of cancer centers with two asterisks (**). Other institutions around the country also specialize in services for the cancer patient. If a patient does not live near any of the cancer centers listed, she should call the nearest medical school, Cancer Information Service, or clinical coopera- tive oncology group (listed later in this chapter). A state-by-state listing of medical institutions offering care to breast cancer and other cancer patients follows: ALABAMA *Comprehensive Cancer Center University of Alabama in Birmingham University of Alabama Hospitals and Clinics 619 South 19th Street Birmingham, Alabama 35233 (205) 934-2651 CALIFORNIA **Community Cancer Control Los Angeles 5800 Wilshire Boulevard Los Angeles, California 90036 (213) 938-2608 *Los Angeles County University of Southern California Comprehensive Cancer Center School of Medicine 2025 Zonal Avenue Los Angeles, California 90033 (213) 226-2008 Mt. Zion Hospital 1600 Divisadero San Francisco, California 94119 (415) 567-6600 Northern California Cancer Program 1801 Page Mill Road Suite 190 Palo Alto, California 94304 (415) 497-5353 Stanford University Medical Center Stanford, California 94305 (415) 497-7313 (415) 497-5055 *UCLA Comprehensive Cancer Center UCLA School of Medicine 924 Westwood Boulevard Suite 650 Los Angeles, California 90024 (213) 825-1532 (213) 825-5268 West Coast Cancer Foundation 50 Francisco Street Suite 200 San Francisco, California 94133 (415) 563-5213 COLORADO *Colorado Regional Cancer Center, Inc. 165 Cook Street Denver, Colorado 80206 (303) 320-5921 CONNECTICUT *Yale University Comprehensive Cancer Center 333 Cedar Street New Haven, Connecticut 06510 (203) 428-4122 DELAWARE The Wilmington Medical Center 14th and Washington Streets Wilmington, Delaware 19899 (302) 428-1212 DISTRICT OF COLUMBIA *Georgetown University/Howard University Comprehensive Cancer Center eo Georgetown University Medical Center Lombardi Cancer Research Center 3800 Reservoir Road, N.W. Washington, D.C. 20007 (202) 625-7066 eo Howard University Cancer Research Center Howard University Hospital Department of Oncology 2041 Georgia Avenue, N.W. Washington, D.C. 20007 (202) 625-7066 119 FLORIDA *Comprehensive Cancer Center for the State of Florida University of Miami School of Medicine /Jackson Memorial Medical Center Centre House, Roof Garden 1400 Northwest 10th Avenue Miami, Florida 33136 (305) 547-6758 GEORGIA Emory University Cancer Center Emory University Hospital Room 606F Atlanta, Georgia 30322 (404) 329-7016 HAWAII **Cancer Center of Hawaii University of Hawaii at Manoa 1997 East-West Road Honolulu, Hawaii 90822 (808) 948-7246 IDAHO Mountain States Tumor Institute 151 East Bannock Boise, Idaho 83702 (208) 386-2711 ILLINOIS *1linois Cancer Council 37 South Wabash Avenue Chicago, Illinois 60603 (312) 346-9813 eo Northwestern University Cancer Center Ward Memorial Building 303 East Chicago Avenue Chicago, Illinois 60611 (312) 649-8674 eo Rush Cancer Center 1725 West Harrison Chicago, Illinois 60612 (312) 947-6386 eo University of Chicago Cancer Research Center 905 East 59th Street Chicago, Illinois 60637 (312) 947-6386 KANSAS Mid-America Cancer Center Program The University of Kansas Medical Center College of Health Sciences and Hospital Rainbow Boulevard at 39th Kansas City, Kansas 66103 (913) 588-5700 KENTUCKY University of Louisville Health Sciences Center Walnut and Preston Streets Louisville, Kentucky 40202 (502) 582-2211 MARYLAND *Johns Hopkins Oncology Center 601 North Broadway Baltimore, Maryland 21205 (301) 955-8822 MASSACHUSETTS Boston University Cancer Research Center 80 East Concord Street Boston, Massachusetts 02118 (617) 247-6075 New England Medical Center Hospital 171 Harrison Avenue Boston, Massachusetts 02111 (617) 482-2800, Ext. 2672 *Sidney Farber Cancer Institute 55 Binney Street Boston, Massachusetts 02115 (617) 739-1100, Ext. 3140 or 3149 MICHIGAN *Michigan Cancer Foundation **110 East Warren Avenue Detroit, Michigan 43201 (313) 833-0710 MINNESOTA *Mayo Comprehensive Cancer Center 200 First Street, SW. Rochester, Minnesota 55901 (507) 282-2511 120 MISSOURI Missouri Cancer Programs, Inc. 115 Business Loop 70 West Columbia, Missouri 65201 (314) 449-3445 NEW MEXICO **New Mexico Cancer Research Treatment Center 900 Camino de Salud, N.E. Albuquerque, New Mexico 87131 (505) 277-3631 NEW HAMPSHIRE Dartmouth College Dartmouth-Hitchcock Medical Center Hanover, New Hampshire 03755 (603) 643-4000, Ext. 2465 NEW YORK Albany Medical College of Union University Albany Medical Center Hospital New Scotland Avenue Albany, New York 12208 (215) 445-5307 Albert Einstein College of Medicine 1300 Morris Park Avenue Bronx, New York 10461 (212) 430-2302 (212) 792-2233 Columbia University Cancer Résearch Center College of Physicians and Surgeons 701 West 168th Street New York, New York 10032 (212) 694-3807 (212) 694-4138 Hospital for Joint Diseases and Medical Center 1919 Madison Avenue New York, New York 10035 (212) 876-7222 **Long Island Cancer Council 560 Broad Hollow Road Melville, New York 11746 (516) 420-1980 *Memorial Sloan-Kettering Cancer Center 1275 York Avenue New York, New York 10021 (212) 794-7646 Mt. Sinai Hospital Fifth Avenue and 100th Street New York, New York 10003 (212) 650-6500 New York University Medical Center Department of Medicine 550 First Avenue New York, New York 10016 (212) 679-3200 *Roswell Park Memorial Institute 666 Elm Street Buffalo, New York 14263 (716) 845-5770 State University of New York Downstate Medical Center 450 Clarkson Avenue Brooklyn, New York 11203 (212) 270-1000 The Strang Clinic 55 East 34th Street New York, New York 10016 (212) 683-1000 University of Rochester Cancer Center 601 Elmwood Avenue Rochester, New York 14642 (716) 275-4865 NORTH CAROLINA *Duke University Medical Center Comprehensive Cancer Center 200 Atlas Street Durham, North Carolina 27705 (919) 684-8111 Cancer Research Center University of North Carolina P.O. Box 3 Swing Building 217H Chapel Hill, North Carolina 27514 (919) 966-1183 (919) 966-3036 Bowman Gray School of Medicine 300 South Hawthorne Road Winston-Salem, North Carolina 27103 (919) 727-4464 OHIO *The Ohio State University Comprehensive Cancer Center 1580 Cannon Drive Columbus, Ohio 43210 (614) 422-5022 The Cancer Center, Inc. 11000 Cedar Avenue Cleveland, Ohio 44106 (216) 421-7300 121 OKLAHOMA Oklahoma Cancer Center University of Oklahoma Health Sciences Center P.O. Box 26901 Oklahoma City, Oklahoma 73190 (405) 271-4485 PENNSYLVANIA *Fox Chase/University of Pennsylvania Comprehensive Cancer Center Fox Chase Cancer Center 7701 Burholme Avenue Fox Chase Philadelphia, Pennsylvania 19111 (215) 342-1000 Jefferson Medical College 11th and Walnut Streets Philadelphia, Pennsylvania 19107 (215) 928-6000 PUERTO RICO Puerto Rico Cancer Center University of Puerto Rico Medical Sciences Campus G.P.O. Box 5067 San Juan, Puerto Rico 00936 (809) 763-2443 (809) 765-2363 RHODE ISLAND Roger Williams General Hospital 825 Chalkstone Avenue Providence, Rhode Island 02908 (401) 456-2070 **Rhode Island Cancer Control Program 345 Blackstone Boulevard Providence, Rhode Island 02906 (401) 351-0500 TENNESSEE Memphis Regional Cancer Center 800 Madison Avenue Memphis, Tennessee 38163 (901) 528-5739 TEXAS *The University of Texas System Cancer Center M.D. Anderson Hospital and Tumor Institute 6723 Bertner Avenue Houston, Texas 77030 (713) 792-3000 e University of Texas Health Sciences Center 5323 Harry Hines Boulevard Dallas, Texas 75235 (214) 688-2166 e The University of Texas Medical Branch Administration Building Suite 645 Galveston, Texas 77550 (713) 765-1902 VERMONT University of Vermont College of Medicine Burlington, Vermont 05401 (802) 656-2653 VIRGINIA MCV/VCU Cancer Center P.O. Box 37 MCV Station Medical College of Virginia Virginia Commonwealth University Richmond, Virginia 23298 (804) 770-7682 (804) 770-7476 WASHINGTON *Fred Hutchinson Cancer Research Center 1124 Columbia Street Seattle, Washington 98104 (206) 292-2930 WISCONSIN *The University of Wisconsin Clinical Cancer Center 1300 University Avenue Madison, Wisconsin 53706 (608) 263-2553 Medical College of Wisconsin 1700 West Wisconsin Avenue Milwaukee, Wisconsin 53233 (414) 344-7100, Ext. 374 * Comprehensive Cancer Center (Some may be contacted toll-free. See Cancer Information Services.) **Community-Based Cancer Control Program 122 RESEARCH — CLINICAL COOPERATIVE ONCOLOGY GROUPS Clinical Cooperative Oncology Groups are com- prised of hundreds of physicians at medical insti- tutions around the country investigating many of the more than 100 types of cancer. Some co- operative groups conduct controlled studies to determine the effectiveness of various treatments for patients with breast cancer. Patients participating in these studies must meet certain criteria and must be under the care of a cooperating oncologist. All patients accepted into the studies receive expert medical care from specially trained teams of doctors. Most of the costs of medical treatment in group studies are borne by the patient. However, specific treatment required by the study, such as extra tests not normally performed, usually are not charged to the patient. Drugs not yet commercially available are supplied at no cost, and, in some cases, trans- portation costs also may be provided. Because each group’s studies are conducted under the administrative policies of its hospital, queries regarding nonmedical patient services should be directed to the relevant institution’s social services department. To learn more about the breast cancer clinical studies, contact The Eastern Cooperative Oncology Group University of Wisconsin Clinical Cancer Center ECOG Operations Office 905 University Avenue Suite 415 Madison, Wisconsin 53706 (608) 263-6650 The Southeastern Cancer Study Group SEG Operations Office Tumor Institute UAB Medical Center — University Station Birmingham, Alabama 35294 (205) 934-5270 The Cancer and Leukemia Group B Department of Neoplastic Disease Mt. Sinai Hospital The City University of New York 100th Street and Fifth Avenue New York, New York 10029 (212) 650-6364 The Southwest Oncology Group University of Kansas Medical Center Operations Office 3500 Rainbow Boulevard Suite 100 Kansas City, Kansas 66103 (913) 831-6996 The Primary Breast Cancer Therapy Group (National Surgical Adjuvant Breast Project) University of Pittsburgh School of Medicine Laboratory of Surgical Research 914 Scaife Hall Pittsburgh, Pennsylvania 15213 (412) 624-2666 HOSPICES There are over 90 health care organizations in 34 states that are planning or developing hospice facilities or services and many groups are currently providing home hospice care and inpatient hospice services to terminally ill patients. Two organizations in particular have been in- volved in the organizational and medical issues of the burgeoning hospice movement. Information on hospices can be obtained from The Association of Community Cancer Centers 4733 Bethesda Avenue Washington, D.C. 20014 The National Hospice Organization 765 Prospect Street New Haven, Connecticut 06511 Hospice Action is an organization attempting to organize public concern for providing hospice care to all who need it. For information, send a stamped, self-addressed envelope to Hospice Action P.O. Box 32331 Washington, D.C. 20007 FINANCIAL AID The following organizations can provide informa- tion regarding financial assistance to cancer patients: The American Cancer Society, Inc. 777 Third Avenue New York, New York 10017 Cancer Care, Inc. One Park Avenue New York, New York 10016 United Way 801 North Fairfax Alexandria, Virginia 22314 A number of government agencies may be able to furnish financial aid to cancer patients. Local offices of the Social Security Administration handle Medicaid, Medicare, and Supplemental Security Income, and the Veterans Administra- tion can be contacted for information about pos- sible assistance. Local and regional offices of the Department of Health, Education, and Welfare can also provide information about assistance. Following is a listing of regional offices of the De- partment of Health, Education, and Welfare. 123 Regional Offices, U.S. Department of Health, Education, and Welfare CALIFORNIA 50 Fulton Street San Francisco, California 94102 (415) 556-6746 COLORADO 1961 Stout Street Denver, Colorado 80202 (303) 837-3373 GEORGIA 50 Seventh Street, N.E. Atlanta, Georgia 30323 (404) 526-5817 ILLINOIS 300 South Wacker Drive Chicago, Illinois 60606 (312) 353-5160 MASSACHUSETTS John F. Kennedy Federal Building Boston, Massachusetts 02203 (617) 223-6831/6 MISSOURI 601 East 12th Street Kansas City, Missouri 64106 (816) 374-3436 NEW YORK 26 Federal Plaza New York, New York 10007 (212) 264-4600 PENNSYLVANIA 3535 Market Street Philadelphia, Pennsylvania 19101 (215) 597-6492 TEXAS 1114 Commerce Street Dallas, Texas 75202 (214) 749-3396 WASHINGTON 1321 Second Avenue Seattle, Washington 98101 (206) 442-0420 The social service programs of many religious organizations offer financial assistance to mem- bers, and requests for aid from nonmembers are sometimes honored. Local churches and temples can provide information about their financial as- sistance programs. Regional Army, Air Force, Marine, and Navy bases may also offer emergency financial aid to retired or active duty personnel and their dependents. LEGAL ASSISTANCE Information about job discrimination against breast cancer patients can be obtained by contacting ® a local representative in the state legislature, or a member of the U.S. House of Represen- tatives or Senate ® a regional office of the U.S. Department of Health, Education, and Welfare e The Equal Employment Opportunity Com- mission 2401 E Street, N.W. Washington, D.C. 20506 ® The American Civil Liberties Union 1346 Connecticut Avenue, N.W. Room 817 Washington, D.C. 20036 e National Labor Relations Board 1717 Pennsylvania Avenue, N.W. Washington, D.C. 20570 PROFESSIONAL, GOVERNMENT, AND LAY ORGANIZATIONS WITH AN INTEREST IN BREAST CANCER The following professional societies and other con- cerned organizations provide both professional guidance and public information in their specialty areas: American Academy of Family Physicians 1740 West 92nd Street Kansas City, Missouri 64114 (816) 333-9700 American Association of Oncological Nurses National League for Nursing 10 Columbus Circle New York, New York 10019 (212) 582-1022 124 American College of Obstetricians and Gynecologists One East Wacker Drive Chicago, Illinois 60601 (312) 222-1600 American College of Radiology 6900 Wisconsin Avenue Chevy Chase, Maryland 20015 (301) 236-4963 American College of Surgeons 55 East Erie Street Chicago, Illinois 60611 (312) 664-4050 American Gynecological Society for the Study of Breast Disease P.O. Box 2215 Gaithersburg, Maryland 20760 American Hospital Association 840 North Lakeshore Drive Chicago, Illinois 60611 (312) 645-9400 American Nurses Association 2420 Pershing Road Kansas City, Missouri 64108 (816) 474-5720 American Psychological Association 1200 17th Street, N.W. Washington, D.C. 20036 (202) 833-7600 American Psychiatric Association 1700 18th Street, N.W. Washington, D.C. 20009 (202) 232-7878 American Public Health Association 1015 18th Street, N.W. Washington, D.C. 20036 (202) 467-5000 American Society of Clinical Oncology, Inc. 6900 Grove Road Thorofare, New Jersey 08086 American Society of Plastic and Reconstruc- tive Surgeons 29 East Madison Suite 807 Chicago, Illinois 60602 (312) 641-0593 American Society of Radiologic Technologists 500 North Michigan Avenue Room 836 Chicago, Illinois 60611 (312) 467-5840 American Society of Therapeutic Radiologists 1836 South Avenue LaCrosse, Wisconsin 54601 American Thermographic Society Department of Diagnostic Radiology 125 M. D. Anderson Hospital 6723 Bertner Avenue Houston, Texas 77025 (713) 792-3000 Association of American Cancer Institutes Missouri Cancer Programs 115 Business Loop 70 West Columbia, Missouri 65201 Association of American Physicians and Surgeons 2111 Enco Drive Suite N 515-519 Oak Brook, Illinois 60521 (312) 325-7911 Association of Community Cancer Centers 4733 Bethesda Avenue Washington, D.C. 20014 (301) 654-2033 Breast Cancer Advisory Center P.O. Box 422 Kensington, Maryland 20795 Breast Disease Association of America 3310 Rochambeau Avenue Bronx, New York 10451 (212) 652-0500 Bureau of Radiological Health Public Affairs Food and Drug Administration HFX-70 5600 Fishers Lane Rockville, Maryland 20857 (301) 443-4600 National Association of Social Workers 1425 H Street, N.W. Suite 600 Washington, D.C. 20005 (202) 628-6800 New York Metropolitan Breast Cancer Group 430 East 67th Street New York, New York 10021 (212) 794-6998 Nurses Association of the American Coliege of Obstetricians and Gynecologists One East Wacker Drive Chicago, Illinois 60601 (312) 222-1600 Radiological Society of North America Educational Materials Division P.O. Box 1897 Chicago, Illinois 60690 (312) 943-0450 Society of Surgical Oncology Howard University Hospital Room 41302 2041 Georgia Avenue, N.W. Washington, D.C. 20060 (202) 625-7066 EDUCATIONAL MATERIALS Educational materials can be located through several sources, in addition to the divisions and national office of the American Cancer Society. The National Cancer Institute publishes many publications for the public, patients, and health- care professionals. To receive a list of these free publications write to the Office of Cancer Communications. The Cancer Information Clearinghouse. The Cancer In- formation Clearinghouse is a service of the Na- tional Cancer Institute’s Office of Cancer Com- munications. The Clearinghouse collects and disseminates information on patient, public, and professional education program materials. A recent bibliography covers breast cancer educa- tional materials. Organizations involved in com- munications and education may both contribute to and draw upon the information. To utilize the service call or write Cancer Information Clearinghouse Office of Cancer Communications National Cancer Institute 7910 Woodmont Avenue Suite 1320 Bethesda, Maryland 20014 (301) 496-4070 Breast Models. Two companies manufacture teach- ing models for use in BSE instruction. The models, which closely resemble female breasts in appear- ance, texture, and weight, help teach proper techniques of breast self-examination and charac- teristics of breast lumps. The BetsiTM Breast Teaching Model is a life- size half-torso which can be set on a table or held in front of a woman to duplicate the actual posi- tion of the breasts. Betsi and other teaching aids are manufactured by OMNI Education A Division of Ortho Pharmaceutical Corporation P.O. Box 220 Somerville, New Jersey 08876 (201) 524-1501 A Breast Self-Examination Training Model, which can be held in one hand and comes with a teaching cassette, is produced by The Spenco Medical Corporation Box 8113 Waco, Texas 76710 1-800-433-2400 (Outside Texas) (817) 772-6000 (In Texas) 126 Appendix Appendix A—Breast Cancer Survival Trends RELATIVE BREAST CANCER SURVIVAL TRENDS (PERCENT) FOR WHITE FEMALES DIAGNOSED FROM 1950 TO 19733 Year of Diagnosis 1950-54 1955-59 1960-64 1965-69 1970-73 All stages 1-year ............ 90 88 89 90 91 BYR wi ssvunnuani 60 62 64 65 10-year ............ 47 50 52 15-year ............ 41 45 20-year ............ 38 Localized 1-year ............ 98 97 97 97 98 5-year ............ 83 83 84 85 10-year ..ivvssenss 72 73 74 15-year .u.eusvrise 67 68 20-year «riers 62 Regional 1-year ............ 91 90 92 92 94 BOYeAr wasnivennvns 50 53 54 56 10-year coven 34 37 39 15-year «cura 28 31 20-year ............ 24 Distant 1-year ............ 64 43 40 44 49 SYVOAY wunrsnsvrans 21 10 7 10 10-Year womans 12 5 2 16-year wuvmvinrn 8 4 20-year ....civs 7 129 RELATIVE BREAST CANCER SURVIVAL TRENDS (PERCENT) FOR BLACK FEMALES DIAGNOSED FROM 1950 to 1973'% Year of Diagnosis 1950-54 1955-59 1960-64 1965-69 1970-73 All stages 1-YEAY .ovinrevense 80 78 77 82 82 B-yeay .uicicssiie 40 46 46 50 10-year ............ 29 37 41 15-year ............ 24 31 20-year ............ 24 Localized 1-year ............ 94 96 95 95 99 5-year ............ 76 76 77 79 10-year ............ 61 70 77 15-year ...coiiis 56% 64% 20-year uuu 5T* Regional 1-year ............ 85 83 85 88 87 B-Y@AL sesusvesnses 32 42 44 48 10-year ...coiuives 21 28 34 15-year ............ 13 23 20-year ............ 11 Distant 1-year ....vviens 55 34 31 44 37 B-year ...unw 12 5 6 8 10-year ............ 5 3 4 15-year ............ 5 1 20-year ............ 7 *Rate has a standard error of between 5 and 10 percent. 130 Appendix B— Benign Breast Masses J\ proximately 80 percent of all women experi- encing symptoms of breast cancer will not have breast cancer, but will be diagnosed as having one of the following noncancerous breast problems: Cystic disease,a common cause of breast lumps in women aged 35 to 55, is rare in women after age 55. Unlike cancer, cysts are movable, spherically shaped, and relatively soft. Often they are associ- ated with nodularity or lumpiness of the breast, are multiple or bilateral. A cyst can be easily diagnosed and eliminated by needle aspiration. On thermography cysts do not appear as ‘hot spots,” but mammography can help in differentiating between a cyst and a solid mass. Women with cystic disease are at an increased risk of developing breast cancer. Intraductal papilloma may produce both a breast mass and a serous (clear) or bloody nipple dis- charge. Obstruction of a duct with a cyst forming in the areolar region may occur. Excision of the mass will cure the condition. Adenofibroma occurs as a palpable tumor in wo- men 15 to 30 years old. The tumors are firm, pain- less, and movable and can be recognized easily on mammograms. Because the symptoms are similar to those of breast cancer, adenofibroma can be diagnosed only by biopsy and examination of the tissue by a pathologist. Cystosarcoma phyllodes is a rapidly growing but relatively uncommon tumor. Wide excision of the tumor will cure most cases, but because it grows rapidly some patients may require simple mastectomy. Mammary fat necrosis, a firm, hard mass often fixed to the skin, closely mimics a cancerous tumor. Occurring most often in large, pendulous, fatty breasts, this condition may appear sponta- neously or may follow a blow to the breast. As with most breast masses, excision and pathologi- cal evaluation are needed for a definitive diagnosis. Plasma cell mastitis or mammary duct ectasia is characterized by a hard, poorly defined mass im- movable in the breast with skin fixation, a recur- rent greenish or brownish nipple discharge, and periods of inflammation characterized by pain and tenderness. Both breasts may exhibit some of the symptoms. Plasma cell mastitis occurs primarily in older women in the age group who are more likely to develop breast cancer. Lipomas, soft-tissue sarcomas, and lymphomas are other neoplasms that occur in less than 1 percent of all cases of neoplasms in the breast. Except for the lipomas, which affect the axillary nodes, none of these neoplasms clinically resembles cancer.!22 131 Appendix C—- Breast Self-examination t is important that breast self-examination be practiced once a month at the same time every month so that it becomes a habit. For pre- menopausal women this is particularly important because monthly cyclical changes affect the texture of the breast. The best time for premenopausal women to examine themselves is several days after the end of their menstrual periods, a time when the breasts are not swollen and tender from fluctuations in hormone levels. For postmeno- pausal women, the time of the month to practice BSE is irrelevant, but if BSE is done on the same day every month (perhaps the woman’s birth date) it is more likely to become a routine health habit. Women may want to keep a record of their self-examinations in a place where they will be re- minded to do BSE: inside a medicine chest, a closet door, or on a bathroom mirror. By prac- ticing monthly BSE, women can become familiar with the size, shape, and feel of their breasts and will be more likely to notice any changes that warrant a physician’s attention. Because some “normal’’ breasts may be relatively lumpy, it is a good idea for a woman to get advice from her physician on how her breasts should feel normally. To do BSE, a woman should stand with her right arm behind the head and the fingers of the left hand extended. Then, she should apply firm but gentle pressure with the flat part of the fingertips on the right breast and rotate her hand in small concentric circles starting at the nipple and moving outward until the entire breast has been palpated. This procedure then should be repeated on the left breast and armpit, and any differences from the last examination should be noted. Then, before a mirror, she should inspect her breasts for any- thing unusual and then bend forward to check for any abnormality in shape. The fingertip inspection should be repeated on both breasts with the woman lying flat on her back, keeping the appro- priate hand behind the head during the examination. Women with very large breasts may have diffi- culty conducting a thorough examination. Steady- ing the outside of the breast by bracing it with the hand or against a solid surface may help. Small- breasted women often mistake a rib for a lump. To determine if a suspected lump actually is a bone, the woman should follow the lump with the fingers to the center of the body where the rib should join the sternum. Some women find it helpful to do a preliminary examination while in the shower or bath — soapy fingers glide more easily over wet skin. To complete the examination, the woman should stand in front of a mirror and look for changes in the size and shape of the breasts and on the surface of the skin. Firmly pressing the palms together in front of the chin will accentuate any dimpling. The breasts should be inspected with the arms at the sides, with the arms raised above the head, and while bending forward from the waist. If the self-examination reveals any changes or abnormalities — a lump or thickening, a discharge from or inversion of the nipple, scaly skin around the nipple, dimpling or puckering of breast skin, swelling or discoloration, alteration in size or shape — medical attention should be sought at once. Although none of these conditions means that a woman has breast cancer, further examina- tion is imperative. 132 Breast self-examination (BSE) is simple. 1. In a standing position, raise one hand in the air. Use two or three fingers of the other hand to gently explore the opposite breast in a clockwise motion, feeling for any unusual lump or mass under the skin. Then do the same thing on the other side. Many doctors suggest doing this part of the exam in the shower. Soapy fingers glide easily over the skin making it easy to concentrate on the texture underneath. 2. When toweling off before a mirror, inspect both breasts for anything unusual, and then bend forward to check for any abnormality in shape. 3. Press each nipple gently and look for a discharge. 4. Repeat the fingertip inspection, this time lying flat on the back with one arm behind the head. Appendix D-Classification System of Breast Carcinoma he following classification system, prepared by the American Joint Committee for Cancer Staging and End Results Reporting, describes the tumor, the condition of the lymph nodes, and the presence of metastasis individually and then combines that information to classify breast cancer into four stages. Under the AJC system, tumors (T) and nodes (N) are described both pre- and postsurgically, because after patho- logical study their condition may change.??! Clinical Classification of Primary Tumor (Presurgery) TX Tumor cannot be assessed TO No evidence of primary tumor TIS Paget’s disease of the nipple with no demonstrable tumor. (Paget’s disease with a demon- strable tumor is classified according to size of the tumor.) T1* Tumor 2 cm or less in greatest dimension Tla: No fixation to underlying pectoral fascia or muscle T1b: Fixation to underlying pectoral fascia and/or muscle T2* Tumor more than 2 cm but not more than 5 cm in its greatest dimension T2a: No fixation to underlying pectoral fascia and/or muscle T2b: Fixation to underlying pectoral fascia and/or muscle *Dimpling of the skin, nipple retraction, or any other skin changes except those in T4b may occur in T1, T2, or T3 without the classification. T3* Tumor more than 5 cm in its greatest dimension T3a: No fixation to underlying pectoral fascia and/or muscle T3b: Fixation to underlying pectoral fascia and/or muscle T4 Tumor of any size with direct extension to chest wall or skin. (Chest wall includes ribs, inter- costal muscles, and serratus anterior muscle, but not pectoral muscle.) T4a: Fixation to chest wall T4b: Edema, including peau d’orange (orange peel skin), ulceration of the skin of the breast, or satellite skin nodules confined to the same breast 134 T4c: Both of the above T4d: Inflammatory carcinoma Pathologic Classification of Primary Tumor (Postsurgery) TIS Preinvasive carcinoma (carcinoma in situ, noninfiltrating intraductal carcinoma, or Paget’s disease of nipple.) Postsurgical TX, TO, Tla and b, T2a and b, T3a and b, T4a, b, c, and d are the same as clinical classifi- cation (presurgery). Clinical Classification of Lymph Nodes (Presurgery) The following information is used to describe the condition of the regional lymph nodes (N): NX NO N1 N2 N3 Regional lymph nodes cannot be assessed clinically No palpable homolateral axillary nodes Movable homolateral axillary nodes Nla: Nodes not considered to contain growth N1b: Nodes considered to contain growth Homolateral axillary nodes considered to contain growth and fixed to one another or to other structures Homolateral supraclavicular or infraclavicular nodes considered to contain growth or edema of the arm Pathologic Classification of Lymph Nodes (Postsurgery) NX NO N1 N2 Regional lymph nodes cannot be assessed clinically No metastatic homolateral axillary nodes Movable homolateral axillary metastatic nodes not fixed to one another or other structures N1b Lymph nodes with only histologic metastatic growth Nla Gross metastatic carcinoma in lymph nodes N1bi: Micrometastasis smaller than 0.2 cm N1bii: Metastasis (larger than 0.2 cm) to 1 to 3 lymph nodes N1biii: Metastasis to 4 or more lymph nodes Nlbiv: Extension of metastasis beyond node capsule Nlbv: Any positive node greater than 2 cm in diameter Homolateral axillary nodes containing metastatic tumor and fixed to one another or to other structures 135 N3 Same as for clinical classification Classification of Metastasis Metastasis (M) is classified: MX Metastasis not assessed MO No (known) distant metastasis M1 Distant metastasis present, specify site When all the information about the tumor, nodes, and metastasis has been assessed and combined, that information will provide the physician with the stage of disease. Disease stages are described as: Stage I A tumor less than 5 cm with minor skin involvement, either affixed or not affixed to the chest wall, muscle, or fascia; nodes not considered to contain growth; no evidence of metastasis Classified: Tla No, Nla MO T1lb No, Nla MO Stage II A tumor less than 5 cm with possible muscle or chest wall fixation; nodes are movable, but may or may not contain growth; no evidence of metastasis Classified: TO N1lb MO Tla N1lb MO T2a, T2b NO, N1la,N1lb MO Stage III A tumor larger than 5 cm with or without fixation or extension to fascia and chest wall; any amount of nodal involvement; no evidence of metastasis Classified: Any T3 N1 or N2 MO Stage IV A tumor of any size with extension to chest wall and skin; any amount of nodal involvement; evidence of metastasis Classified: T4 Any N Any M Any T N3 Any M Any T Any N M1 136 Appendix E—- Chemotherapeutic Drugs and Their Side Effects he following chart lists the types of drugs DRUGS commonly used to combat cancer, their gener- ANTIBIOTICS ic and trade names, and their immediate (acute) SIDE EFFECTS ‘ a1 adriamycin Immediate: nausea, vomit- and delayed side effects: (Doxorubicin, ing, red urine; DRUGS SIDE EFFECTS actinomycin D) Delayed: bone marrow de- ALKYLATING AGENTS pression, alopecia, stomati- cyclophosphamide Immediate: nausea and tis, and cardiac damage (Cytoxan) vomiting; above a certain dose Delayed: bone marrow MITOTIC INHIBITORS depression (lowering the vinblastine sulfate Immediate: nausea and bone marrow’s production (Velban) of blood cells), alopecia (hair loss), cystitis (in- flammation of urinary bladder), late occurrence of acute leukemia (follow- 2 vincristine sulfate ing long-term use) L-phenylalanine Immediate: nausea; (Oncovin) mustard (mel- Delayed: bone marrow phalan, Alkeran) depression ANTIMETABOLITES 5-Fluorouracil Immediate: nausea and (5-FU) vomiting; Delayed: oral and gastro- intestinal ulceration, stoma- titis (inflammation of mouth tissues), diarrhea, bone mar- row depression methotrexate Immediate: occasional (amethopterin) diarrhea; Delayed: hepatic fibrosis (death of liver tissue), oral and gastrointestinal ulcer- ation, bone marrow depression 137 vomiting; Delayed: alopecia, stoma- titis, bone marrow depres- sion, areflexia (loss of re- flexes) Immediate: none; Delayed: areflexia, pe- ripheral neuropathy, (func- tional disturbances and pathological changes in the peripheral nervous system), paralytic ileus (temporary obstruction of the intes- tines due to transient paral- ysis; loss of normal intes- tinal function), mild bone marrow depression Appendix F — Glossary ny words not included in this glossary can be found in the index and are referred to in the text. Ablative Therapy treatment by removal or erad- ication of a body part Acini the milk-producing glands in the breast Adenocarcinoma cancer involving glandular tissue Adenosarcoma a mixed tumor composed of sar- comatous and glandular elements (see Sarcoma) Adjuvant Treatment a secondary form of treat- ment which usually follows surgery and involves chemotherapy or radiation therapy Adrenalectomy surgical removal of one or both adrenal glands Adrenal Gland a gland near the kidney which produces a variety of substances includ- ing estrogen, androgen, and progestin Advanced Cancer a term used to describe the stage of cancer in which the disease has spread from the primary cancer site (e.g. the breast) to other body systems by traveling through the lymphatic system or blood stream and is usually medically irrever- sible. Also referred to in this Digest as terminal cancer Alkylating Agent one of a group of highly reac- tive chemical compounds that repre- sents an important class of anti-cancer drugs which work by inhibiting cell growth Alopecia loss of hair Amenorrhea absence or abnormal stoppage of menstruation; also called amenia. Can be caused by obesity or extreme under- weight, a disorder of the hypothalmus, a deficiency of the ovaries or pituitary, or pregnancy and lactation Androgen male sex hormone Androsterone an androgen Areflexia loss or absence of the reflexes Areola the pigmented area on the breast sur- rounding the nipple Aspirate to remove fluid from a cavity by apply- ing suction; the substance or material obtained by aspiration Asymptomatic showing no symptoms Axilla the armpit Benign not malignant, nor likely to recur; favor- able for recovery Bilateral having two sides, or pertaining to both sides Biopsy the removal and microscopic examina- tion of tissue from the body for pur- poses of diagnosis. If cancer is evident, the biopsy is “positive; if no cancer exists, the biopsy is referred to as “negative.” Breast Augmentation a surgical procedure to in- crease the size of the breast BSE breast self-examination; self-inspection of the breasts by palpation and observation Carcinogen a cancer-causing agent Carcinogenesis the production of a carcinoma Carcinoma a malignant new growth made up of epithelial cells tending to infiltrate the surrounding tissues and metastasize Cardiotoxic having a poisonous or harmful effect upon the heart Chemotherapy treatment by chemicals or drugs which have the ability to destroy cancer cells Chromosome a structure in the nucleus containing a linear thread of DNA; the gene-bearing structure in the nucleus. Clavicle collar bone Clinical pertaining to the direct treatment of patients 138 Clinical Trial the systematic investigation of mate- rials or methods, according to a formal study plan, as a means of determining effect or rela- tive effectiveness, using people with a partic- ular disease or class of diseases Contralateral pertaining to the opposite side Cyst a closed cavity or sac that contains liquid or semi-solid material Cystitis inflammation of the urinary bladder Cytology the scientific study of the origin, struc- ture, and functions of cells Cytoplasm the protoplasm of a cell exclusive of that of the nucleus; the site of most of the chemical activities of the cell Diagnosis the definitive determination of the presence and nature of a disease DNA (deoxyribonucleic acid) an acid found in the nucleus of all cells which carries genetic information Edema the presence of abnormally large amounts of fluid in the body, characterized by swell- ing or puffiness Endocrine Glands glands which secrete hormones into the blood stream or lymphatic system Endocrine Therapy (see Hormone Therapy) Epithelium the tissue lining, covering and protect- ing internal and external surfaces of the body Estrogen a female sex hormone Estrogen-receptor Assay a diagnostic test to deter- mine whether a cancer’s growth is dependent on estrogen Excisional Biopsy total surgical removal of tissue to be examined Extended Radical Mastectomy surgical removal of the breast, skin, pectoral muscles (both major and minor), all axillary and internal mam- mary lymph nodes, fat, and sometimes a sec- tion of rib Fascia a sheet or band of fibrous tissue which covers muscles and various organs of the body Fibrocystic Disease a benign breast condition consisting of an overgrowth of fibrous tissue often combined with formation of cysts Film/screen (See Mammography) Gene the biologic unit of heredity, self-repro- ducing and located at a definite position on a particular chromosome Genetic pertaining to reproduction, or to birth or origin; inherited Halsted Radical Mastectomy surgical removal of the breast, skin, pectoral muscles (both major and minor), all axillary lymph nodes and fat Hematuria blood in the urine Hepatic necrosis death of liver tissue Hormone chemical product of an organ which, when secreted into body fluids, has a speci- fic effect on other organs Hormone Therapy treatment by alteration of hormonal balance designed to adversely in- fluence a tumor whose viability is dependent upon the presence or absence of particular hormones. This may be accomplished either by surgery, radiation, or hormonal medication. Hypophysectomy surgical removal of the hypo- physis, or pituitary gland Immunotherapy the use of highly complex vac- cines and antibodies to stimulate the body’s disease-defense mechanism Incidence the rate at which a certain event occurs, as the number of new cases of cancer occur- ring during a certain period. This is in con- trast to prevalence, which refers to the total number of cases in a population Incisional Biopsy surgical removal of a portion of tissue to be examined Infraclavicular Nodes lymph nodes lying beneath the clavicle, or collar bone In Situ Cancer cancer confined to the site of origin without invasion of neighboring tis- sues; localized, non-invasive Invasive Cancer cancer having the ability to in- filtrate and actively destroy surrounding tissue Irradiation treatment by radiation Lactiferous Sinus a vessel which transports breast milk from the milk-producing acini to the pin-sized openings of the nipple Lesion any pathological or traumatic discontin- uity of normal tissue; an abnormal thicken- ing or growth of fibrous tissue; tumor Localized Cancer a cancer confined to the site of origin Lumpectomy (see Tylectomy) Lymph fluid found in the lymphatic system which is derived from tissue fluids. Lymph is collected from all parts of the body and returned to the blood via the lymph system. Lymphatic System circulatory network of lymph- 139 carrying vessels, and the lymph nodes, spleen, and thymus which produce and store infec- tion-fighting cells Lymphedema chronic edema of the extremeties due to accumulation of fluid as a result of obstruction or severance of lymph vessels or disorders of the lymph nodes. Characterized by puffiness and swelling of the arm or leg Lymph Nodes small masses of tissue which are situated along the lymphatic vessels which re- move noxious agents from the lymph Malignant tending to become progressively worse and to result in death. Having the properties of invasion and metastasis; said of cancerous tumors Mammogram the image produced by the X-ray procedure mammography that details the structure of breast tissue Mammography X-ray examination of the breast used to detect and diagnose breast disease, including cancer Mastectomy surgical removal of the breast (see Extended Halsted Radical Mastectomy, Hal- sted Radical Mastectomy, Modified Halsted Radical Mastectomy, Simple Mastectomy, Partial Mastectomy, Tylectomy, Subcutan- eous Mastectomy) Mediastinum a cavity between two principal portions of an organ, commonly used in re- ferring to that area of the thoracic cavity (chest) containing all structures except the lungs i Melanoma a skin tumor containing dark pigment Menarche the beginning of menstruation Menopause the cessation of menstruation Metastasis the spread of disease from one part of the body to another Mitosis cell division; the process by which the body grows and replaces cells Modified Radical Mastectomy surgical removal of the breast, some fat, and most of the axil- lary lymph nodes, leaving the chest muscles intact Mortality Rate death rate; the number of deaths in relation to population, usually given per 100,000 population Multicentric having many centers Mutation in genetics; a permanent change in the genetic material, usually in a single gene Needle Aspiration removal of fluid from a tumor or cyst by a fine needle Needle Biopsy removal of a small sample of tis- sue by suction with a wide-bore needle Neoplasm any abnormal formation or growth Neuritis inflammation of a nerve, usually char- acterized by pain and tenderness, paralysis, and loss of reflexes Nipple the pigmented projection on the breast which is surrounded by, but does not in- clude, the areola; the outlet of milk from the breast Nipple Banking a surgical method by which the nipple is saved by grafting it to another part of the body for storage until it can be re-grafted onto a reconstructed breast Node (see Lymph Node) Nodule a small solid node which can be detected by touch; a term applied to lymph nodes Nucleoplasm the protoplasm composing the nucleus of a cell Nulliparous having never given birth to a child Occult Tumor a concealed or hidden tumor Oncology the study of tumors Oncogene hypothetical viral genetic material passed from parent to offspring which carries the potential to develop cancer One-step Procedure (One-stage) a surgery which involves biopsy and breast surgery in a single operation Ovariectomy (oophorectomy) surgical removal of the ovaries Paget’s Disease an inflammatory cancerous condition of the areola and nipple, usually associated with carcinoma of the lactiferous ducts and deeper structures of the breast, occurring usually in middle-aged women Palliative affording relief, but not cure Palpable perceptible by touch Palpate to examine by the hand; to feel Paralytic ileus obstruction of the intestines due to paralysis; loss of normal intestinal function Partial Mastectomy surgical removal of cancerous breast, tumor, and 2 to 3 centimeters of surrounding tissue, fascia, skin, and muscle, leaving some of the breast and all axillary and inner lymph nodes 140 Pathology the branch of medicine that treats the structural and functional changes in tissues and organs of the body which cause or are caused by disease Pectoralis Muscles muscular tissues attached to the chest wall and to the upper arms. These are divided into a larger group called pectoralis major, and a smaller group called pectoralis minor Physiological characteristic of the normal func- tioning or state of the body Pituitary Gland the endocrine gland located at the base of the brain that secretes several im- portant hormones which regulate the proper functioning of the thyroid, gonads, adrenal cortex, ovaries, and other endocrine organs Placebo an inactive substance given to satisfy the patient’s symbolic need for drug therapy, and used in controlled studies to determine the efficacy of drugs. Also, a procedure with no intrinsic therapeutic value, performed for such purposes Predisposition a latent susceptibility to disease which may be activated under certain conditions Prevalence the total number of cases of a disease existing at a certain time within a certain area Primary Cancer the type of cancer arising from the originating organ Progestin the hormone progesterone Progesterone the hormone produced by the adrenal glands; progestin Prognosis a forecast as to the probable outcome of a disease; the prospect as to recovery from a disease as indicated by the nature and symp- toms of the case Prolactin one of the hormones of the pituitary gland that stimulates and sustains lactation Protoplasm the essential material of all plant and animal cells. It is composed mainly of nucleic acids, proteins, lipids, carbohydrates, and in- organic salts. The protoplasm surrounding the nucleus is called cytoplasm, and that composing the nucleus is the nucleoplasm Prosthesis an artificial substitute for a missing body part Radiation Therapy (Radiotherapy) the treatment of disease by X-rays or by other radiant energy Reconstructive Mammaplasty rebuilding of the breast by plastic surgery 141 Recurrence the return of symptoms in the same general area as the primary tumor Reduction Mammaplasty reconstruction of the breast by plastic surgery to reduce its size Regimen a strictly regulated scheme of diet, exercise, or other activity designed to achieve certain ends. In cancer treatment, a therapy plan Remission a decrease or disappearance of the symptoms of a disease; also the period during which such diminution occurs Sarcoma a tumor made up of tissue composed of closely packed cells embedded in a homo- genous tissue. Sarcomas are found frequently in connective tissue and are often highly cancerous Simple Mastectomy (Total Mastectomy) surgical removal of the breast tissue only Staging a procedure in which the extent of dis- ease is determined by diagnostic tests such as X-rays, blood tests, body scans, and urin- alyses. In breast cancer diagnosis, these tests are undertaken after biopsy or after mastec- tomy to ascertain the level of malignancy be- yond the breast Stomatitis inflammation of mouth tissues Subcutaneous Mastectomy surgical removal of internal breast tissue, leaving the skin, and preserving the nipple, if possible. A prophy- lactic treatment for breast cancer Supraclavicular Nodes lymph nodes located above the clavicle, or collar bone Survival Rate refers to the percentage of people who live a set period of time after a surgical procedure or the diagnosis of disease, as op- posed to the percentage of those who die T-Antigen Skin Test a breast cancer diagnostic pro- cedure in which the patient’s skin is tested for the presence of a substance called T-anti- gen, suspected to exist only in the breast membranes of breast cancer patients Terminal Stage the final stage of advanced cancer when only palliative treatment is possible, with no further hope for control of disease spread; fatal Thermography a breast cancer detection method which involves measuring heat patterns with an infrared camera to record skin surface temperatures. Abnormalities in the breast are represented by ‘hot’ spots in the result- ant thermographic photographs Total Mastectomy (see Simple Mastectomy) Transillumination a breast cancer detection method in which light is passed through breast tissues to detect and differentiate be- tween cysts and cancerous tumors Tumor a growth of tissue in which the multi- plication of cells is uncontrolled and progres- sive; also called a neoplasm or lesion. 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(ASK A FRIEND TO EXPLAIN RE- CONSTRUCTION), NEW YORK mammaplasty information program, 106 AGE and adjustment to breast loss, 68 and candidacy for mammaplasty, 42 and risk for breast cancer, 5 and screening methods, 21 ALKERAN see MELPHALAN ALKYLATING AGENTS breast cancer chemotherapy, 33, 137 AMERICAN CANCER SOCIETY Breast Cancer Detection Demonstration Projects, 19, 21, 100 financial aid, 50 information/education programs, 95-97, 100, 102, 104-105 listing of local divisions, 111-113 Reach to Recovery Program, 36, 38, 70, 82, 97, 102-105 study of job discrimination, 49-50 survey of attitudes toward breast cancer, 17, 56, 59-60, 62, 95-96 types of services provided, 110-111 AMERICAN HOSPITAL ASSOCIATION report on hospital costs, 47 AMERICAN INDIANS breast cancer mortality, 4 amethopterin see METHOTREXATE ANDROGEN high dose in treatment of breast cancer, 34 side effects, 40 ANDROSTENEDIONE estrogen precursor, 34 ANTIBIOTICS breast cancer chemotherapy, 33, 137 ANTIESTROGENS breast cancer chemotherapy, 34-35 side effects, 40 ANTIGENS possible tumor markers, 22 ANTIMETABOLITES breast cancer chemotherapy, 33, 137 ARM mastectomy side effects, 26, 28, 36, 38 ASIA breast cancer statistics, 5-6 ASTAN-AMERICANS breast cancer statistics, 3-4, 6 ASSOCIATION OF COMMUNITY CANCER CENTERS source of hospice information, 123 source of professional and public informa- tion, 125 atomic bomb see RADIATION attitudes see EMOTIONAL FACTORS BACILLE CALMETTE-GUERIN (BCG) in treatment of breast cancer, 35 BAPTIST HOSPITAL, MIAMI post-mastectomy counseling program, 104 BELL SYSTEM employment of cancer patients, 51 BENIGN BREAST DISEASE anxieties, 56 differential diagnosis, 131 Parke-Davis publication, 102 159 and risk for breast cancer, 5-7 treatment of fibrocystic disease, 31 BIOPSY excisional, 23-24 needle, 23 one-step vs. two-step procedure, 24, 62-63, 103 birth control pills see ORAL CONTRACEPTIVES BLACKS breast cancer statistics, 3-4, 130 BLUE CROSS-BLUE SHIELD catastrophic illness coverage, 48 BODYWEIGHT and candidacy for mammaplasty, 42 and incidence of breast cancer, 6 BRASSIERES fit following reconstructive surgery, 43 fit for prostheses, 38 BREAST CANCER advanced, 46, 48, 77-79, 106-108 attitudes of health professionals, 87-91 cause, 5-8 classification, 10, 24-25, 134-136 detection and diagnosis, 17-25, 59-65 development, 10 economic factors, 47-52 emotional factors, 55-75 family reactions, 80-86 information and education programs, 95-108 information resources, 109-126 metastasis, 11, 46, 76-77, 106-107 recurrence, 5, 29, 46, 76-77, 106-107 risk factors, 5-8 terminal, 46, 48, 77-79, 106-108 treatment, 26-40 See also CHEMOTHERAPY; MAMMAPLASTY,; MASTECTOMY; RADIATION BREAST CANCER ADVISORY CENTER breast cancer information, 102 listing, 125 Breast Cancer Detection Demonstration Projects see AMERICAN CANCER SOCIETY; NATIONAL CANCER INSTITUTE BREAST CANCER STATISTICS Africa, 5 American Indians, 4 Asia, 5-6 Asian-Americans, 3-4, 6 Blacks, 3-4, 130 Caucasians, 3-4, 129 Europe, 5 Japan, 6-7 Jews, 5 Parsi women, 7 post-mastectomy survival and recurrence, 26-29, 31-32 United States, 3-6 See also CANCER STATISTICS breast reconstruction see MAMMAPLASTY BREAST SELF-EXAMINATION (BSE) avoidance, 59-60 awareness and practice, 17 public education programs, 95-103 teaching models, 126 technique, 132-133 (illus.) BREASTS anatomy, 11, 13 (illus.) and body image, 56, 58, 68-69 cyclical changes, 10 See also LYMPHATIC SYSTEM; NIPPLES; PECTORAL MUSCLES BROMPTON COCKTAIL pain relief, 79 Bureau of Radiological Health see FOOD AND DRUG ADMINISTRATION CALIFORNIA antidiscrimination law, 51 CANADA Tamoxifen trials, 34-35 Cancer Care, Inc. see NATIONAL CANCER FOUNDATION CANCER CENTER, INC., CLEVELAND at-home rehabilitation project, 105 CANCER CENTERS listing, 118, 122 Cancer Information Clearinghouse see NATIONAL CANCER INSTITUTE CANCER INFORMATION SERVICE listing, 113 see also NATIONAL CANCER INSTITUTE CANCER STATISTICS United States, 55 See also BREAST CANCER STATISTICS CATHOLIC CHARITIES financial aid, 50 CAUCASIANS breast cancer statistics, 3-4, 129 CELLS, CANCER doubling times, 11 metastasis, 46 mutations, 10 transformation, 10 CELLS, NORMAL mitosis, 9-10 structure, 9 CHEMICALS cancer-causing agents, 10 160 CHEMOTHERAPY costs, 47-48 educational materials, 106 emotional factors, 70-71 side-effects, 33, 39, 71, 105, 137 in treatment of breast cancer, 32-34 See also individual drugs and hormones CLINICAL COOPERATIVE ONCOLOGY GROUPS listing, 123 CMF see 5-FLUOROURACIL COLORADO REGIONAL CANCER CENTER, INC. oncology nursing program, 108 COLUMBIA MEDICAL PLAN, MARYLAND BSE program,102 Comprehensive Cancer Centers see NATIONAL CANCER INSTITUTE contagion see MISCONCEPTIONS CORTISONE administration following adrenalectomy or hypophysectomy, 39-40 costs see ECONOMIC FACTORS CYCLOPHOSPHAMIDE breast cancer chemotherapy, 33-34, 137 Cytoxan see CYCLOPHOSPHAMIDE DARTMOUTH-HITCHCOCK MEDICAL CENTER, NEW HAMPSHIRE mastectomy guidelines for nurses, 108 deoxyribonucleic acid see DNA DES see DIETHYLSTILBESTROL DIET during radiation or chemotherapy, 39, 106 and risk for breast cancer, 5-6 DIETHYLSTILBESTROL and risk for breast cancer, 6 DNA inhibition by chemotherapy, 33 role in mitosis, 9-10 Doxorubicin see ADRIAMYCIN drug therapy see CHEMOTHERAPY ECONOMIC FACTORS cancer costs, 47-50 cost of mammaplasty, 42 - insurance, 48-49 sources of financial aid to cancer patients, 123-124 See also JOB DISCRIMINATION EDUCATION PROGRAMS on breast cancer, 95-108 EMOTIONAL FACTORS advanced cancer, 77-79 attitudes toward breast cancer, 55-56, 58, 60, 62, 95-96 161 chemotherapy and radiation, 70-72 detection and diagnosis, 59-65 fear, 55-61, 67-68, 70-71, 73, 76-77, 79-82, 86, 99, 102-106 mammaplasty, 73-75 mastectomy, 66-70, 103-105 reactions of family members, 65, 69-72, 80-86 reactions of health professionals, 87-91 recurrence or metastasis, 76-77 terminal cancer, 77-79 employment see JOB DISCRIMINATION ENGLAND hospice concept, 79 ESTROGEN and development of breast cancer, 6-7 high doses in treatment of breast cancer, 34 receptor assay, 24, 34 side effects of large doses, 40 See also DIETHYLSTILBESTROL EUROPE breast cancer statistics, 5 FAMILY coping with breast cancer, 65, 69-72, 79-86 counseling programs, 107 fear see EMOTIONAL FACTORS financial impacts see ECONOMIC FACTORS FLUDROCORTISONE administration following adrenalectomy and hypophysectomy, 40 FLUOROSCOPY and risk of breast cancer, 7 5-FLUOROURACIL breast cancer chemotherapy, 33-34, 137 FOOD AND DRUG ADMINISTRATION Bureau of Radiological Health, 21 mammography regulation, 21 warning labels on estrogens, 6-7 FORD, BETTY mastectomy, 95-96 FOX CHASE CANCER CENTER, PHILADELPHIA mastectomy guidelines for nurses, 108 FRED HUTCHINSON CANCER RESEARCH CENTER, SEATTLE nutrition book for radiation/chemotherapy patients, 106 GALLUP ORGANIZATION survey of attitudes toward breast cancer, 17, 56, 95-96 GENETICS oncogenes, 10 and risk for breast cancer, 5 GEORGETOWN UNIVERSITY MEDICAL CENTER NURSUPPORT program, 65, 102-103 psychosocial rounds for oncology fellows, 108 radiation/chemotherapy booklet, 106 GRAPHIC STRESS TELETHERMOMETRY (GST) detection device, 22 GREAT BRITAIN study of treatment methods, 32 see also ENGLAND HAAGENSEN, C. D. survival study, 27 Halsted radical mastectomy see MASTECTOMY, Halsted radical health insurance see MEDICAL INSURANCE HEALTH INSURANCE PLAN OF GREATER NEW YORK (HIP) "screening study, 19, 95 HEALTH PROFESSIONALS education programs, 107-108 emotional involvement, 87-91 preoperative counseling, 65-67 professional societies, 124-125 See also NURSES; PHYSICIANS HEIGHT and incidence of breast cancer, 6 heredity see GENETICS HILLHAVEN HOSPICE, TUCSON care of terminal patients, 107 hormones see individual hormones HOSPICE, INC., NEW HAVEN care of terminal patients, 107 HOSPICES care of terminal patients, 78, 107 information resources, 123 HOSPITALS costs, 47-48 See also individual hospitals and clinics husbands see FAMILY; MEN; SEXUAL RELATIONSHIPS HYPERCALCEMIA side-effect of estrogen therapy, 40 HYPOPHYSECTOMY side effects, 39-40 in treatment of breast cancer, 24, 34 IMMANUEL ST. JOSEPH’S HOSPITAL, MINNESOTA mastectomy information manual, 104 IMMUNOTHERAPY treatment of breast cancer, 35 India see PARSI WOMEN INFORMATION RESOURCES for breast cancer patients, 109-126 insurance see ECONOMIC FACTORS irradiation see RADIATION JAPAN breast cancer statistics, 6-7 JEWISH SOCIAL SERVICES financial aid, 50 JEWS breast cancer statistics, 5 JOB DISCRIMINATION cancer patients, 49-52 information resources, 124 KAISER PERMANENTE MEDICAL CARE PROGRAM, SANTA CLARA breast cancer counseling program, 103-104 KUSHNER, ROSE Breast Cancer Advisory Center, 102 LDS HOSPITAL, SALT LAKE CITY detection program, 102 oncology nursing schedules, 108 LEVAMISOLE treatment of breast cancer, 35 LIFE INSURANCE discrimination against cancer patients, 49 Lumpectomy see TYLECTOMY LYMPHATIC SYSTEM anatomy, 11, 14 (illus.) in spread of breast cancer, 27-29 LYMPHEDEMA following mastectomy, 26, 28, 36 M.D. ANDERSON HOSPITAL AND TUMOR INSTITUTE, HOUSTON nurses’ training in cancer detection, 103 MAKE TODAY COUNT, BURLINGTON, IOWA terminal illness counseling service, 107 MAMMAPLASTY methods, 41-45 educational programs, 106 emotional factors, 43, 45, 73-75 incentive to seek early treatment, 61 after partial mastectomy, 29 for remaining breast, 43-45 mammary carcinoma see BREAST CANCER MAMMOGRAPHY cost, 47 detection device, 19, 21 diagnostic device, 23 radiation exposure, 19, 21 and risk of breast cancer, 7 xeroradiography, 19 MASTECTOMY comparison of methods, 31-32 emotional response, 55-58, 62-63, 65-70, 80-86, 103-105 extended radical, 27-28 162 Halsted radical, 26-29, 31, 43 modified radical, 28 one-step vs. two-step procedure, 24, 62-63, 102 partial, 29 rehabilitation following surgery, 36-38, 104-105 simple, 28-29 subcutaneous, 31 See also MAMMAPLASTY; PROSTHESES MASTECTOMY COUNSELING FOR MEN, SAN JOSE counseling program, 105 MAYO CLINIC study of discrimination against cancer patients, 49, 51 MEDIA coverage of breast cancer, 95-98 MEDICAID coverage for breast cancer, 48 MEDICAL INSURANCE coverage in the United States, 48-49 discrimination against cancer patients, 49 mammaplasty coverage, 42 MEDICARE coverage for breast cancer, 48-49 MELPHALAN breast cancer chemotherapy, 33, 137 MEMORIAL SLOAN-KETTERING CANCER CENTER, NEW YORK post-hospital support group, 105 post-mastectomy rehabilitation group, 70, 104 MEN breast cancer statistics, 3 inclusion in BSE instruction, 60 mastectomy counseling program, 105 reactions to partners’ breast cancer, 82-84 MENOPAUSE and effectiveness of L-PAM chemotherapy, 33 and endocrine manipulation, 34 and risk for breast cancer, 6 MENSTRUATION history and risk for breast cancer, 6 MENTAL HEALTH ASSOCIATION OF DADE COUNTY, INC. post-mastectomy rehabilitation group, 105 METHOTREXATE breast cancer chemotherapy, 33, 137 METROPOLITAN LIFE INSURANCE COMPANY employment of cancer patients, 51 MICHIGAN CANCER FOUNDATION radiation pamphlet, 106 milk arm see LYMPHEDEMA MISCONCEPTIONS contagion, 5 touching or bruising, 5 MITOTIC INHIBITORS breast cancer chemotherapy, 33, 137 NATIONAL CANCER FOUNDATION Cancer Care, Inc., 48, 50, 107, 113 NATIONAL CANCER INSTITUTE Breast Cancer Detection Demonstration Projects, 19, 21, 100 Cancer Information Clearinghouse, 109, 126 Cancer Information Service, 50, 99, 109, 113-115 Community-Based Cancer Control Programs, 119-122 Comprehensive Cancer Centers, 118-122 facilities providing breast exams, 116-118 information and materials, 50, 59, 98-102, 106, 108-109, 113-115, 126 National Surgical Adjuvant Breast Project, 26- 27, 29, 32-33 Office of Cancer Communications, 98-102, 106, 108-109, 126 research studies, 19, 21, 43, 47, 96-98 NATIONAL CANCER INSTITUTE OF PERU study of survival following mastectomy, 28 National Surgical Adjuvant Breast Project (NSABP) see NATIONAL CANCER INSTITUTE NEOPLASMS result of mutations, 10 NEW YORK METROPOLITAN BREAST CANCER GROUP professional education programs, 108 NEW YORK STATE antidiscrimination laws, 51 NIPPLES banking and reconstruction, 45, 75 symptoms of breast cancer, 23 See also BREASTS NORTH CAROLINA Division of Vocational Rehabilitation Services, 51 NURSES care of breast cancer patients, 69, 76-77, 87-89 NURSUPPORT counseling program, 65, 102-103 patient instruction in BSE, 59, 100-102 professional training, 108 nutrition see DIET obesity see BODYWEIGHT oncogenes see GENETICS Oncovin see VINCRISTINE SULFATE ORAL CONTRACEPTIVES and risk for breast cancer, 6-7 OVARIECTOMY and risk for breast cancer, 6 side-effects, 39 treatment of breast cancer, 24, 34 163 PALPATION by physician, 17 size of palpable lumps, 11 See also BREAST SELF-EXAMINATION (BSE) L-PAM see L-PHENYLALANINE MUSTARD PARITY and risk for breast cancer, 6 PARKE-DAVIS AND COMPANY publication on benign breast tumors, 103 PARSI WOMEN breast cancer statistics, 7 PECTORAL MUSCLES anatomy, 12 (illus.) tumor involvement, 28 PERSONALITY effect of mastectomy on body image, 56, 58, 68-69 and treatment delay, 61 L-PHENYLALANINE MUSTARD breast cancer chemotherapy, 33-34, 137 PHYSICIANS attitudes toward breast cancer patients, 87-88 attitudes toward mammaplasty, 41 breast examinations, 17 counseling mammaplasty patients, 73-75 counseling mastectomy patients, 63, 65 incidence of breast cancer after atomic bomb, 7 mammography, 19, 21 side-effects, 39, 105 in treatment of breast cancer, 28-29, 31-32, 76-77 radio see MEDIA Reach to Recovery Program see AMERICAN CANCER SOCIETY reconstruction see MAMMAPLASTY REHABILITATION emotional recovery from mastectomy, 67-70, 103-105 physical recovery from mastectomy, 36-38 self-help groups, 70 See also MAMMAPLASTY RIVERSIDE HOSPICE, NEW JERSEY care of terminal patients, 107 ROCKEFELLER, HAPPY mastectomy, 95-96 ROLLIN, BETTY First You Cry, 97 ST. FRANCIS INSTITUTE, WASHINGTON, D.C. terminal illness counseling, 107 ST. LUKE’S HOSPITAL CENTER, NEW YORK care of terminal patients, 107 SCREENING PROGRAMS counseling metastatic and terminal patients, 76,78 Breast Cancer Detection Demonstration as an information resource, 110 patient instruction in BSE, 17, 59 Pill, the see ORAL CONTRACEPTIVES PITRESSIN administration following hypophysectomy, 40 pituitary gland see HYPOPHYSECTOMY plastic surgery see MAMMAPLASTY PROGESTERONE receptor assay, 24 secretion by the ovaries, 34 PROGESTIN high doses in treatment of breast cancer, 34 PROJECT H.E.L.P., ALABAMA BSE instruction program, 100 PROLACTIN stimulation of breast cancer growth, 34 PROSTHESES after mastectomy, 38-39 PUBLIC SERVICE ANNOUNCEMENTS about breast cancer, 106 quadrant excision see TYLECTOMY RADIATION in causation of breast cancer, 7 to destroy ovaries, 24, 34 educational materials, 106 emotional factors, 70-72 Projects, 19, 21, 100 Health Insurance Plan of Greater New York, 19, 95 SEXUAL RELATIONSHIPS effect of chemotherapy, 71 after mastectomy, 84 S.H.A.R.E. (SELF-HELP ACTION AND RAP EXPERIENCE FOR POST-MASTECTOMY WOMEN). counseling group, 105 SIDNEY FARBER CANCER INSTITUTE chemotherapy booklet, 106 SILICONE-GEL IMPLANTS for breast reconstruction, 43-44 SOCIOECONOMIC STATUS and incidence of breast cancer, 6 STAGING to determine extent of cancer, 24 for one-step procedure, 62 prior to simple mastectomy, 28 STANFORD UNIVERSITY MEDICAL CENTER counseling on terminal illness, 107 post-mastectomy counseling program, 104 reconstruction information program, 106 SWEDEN radiation study, 32 TAMOXIFEN in breast cancer treatment, 34-35 164 TELEPHONE INFORMATION SERVICES Cancer Information Services, 99, 109, 113-115 listing, 113-115 telethermometry see GRAPHIC STRESS TELE- THERMOMETRY television see MEDIA THERMOGRAPHY detection device, 19, 21-22 THIRD NATIONAL CANCER SURVEY United States incidence study, 3 TYLECTOMY surgical technique, 29, 31 ULTRASOUND detection device, 22 UNITED STATES breast cancer statistics, 3-6 cancer statistics, 55 societal emphasis on breasts, 56 UNIVERSITY OF WASHINGTON HOSPITAL BSE instruction program, 100 Velban see VINBLASTINE SULFATE VETERANS ADMINISTRATION cancer benefits, 49 VINBLASTINE SULFATE breast cancer chemotherapy, 33, 137 VINCRISTINE SULFATE breast cancer chemotherapy, 33, 137 VIRUSES mouse mammary tumor virus, 7 VOCATIONAL REHABILITATION ACT OF 1973 eligibility of cancer patients, 51 wedge excision see TYLECTOMY X-rays see MAMMOGRAPHY xeroradiography see MAMMOGRAPHY XEROX CORPORATION mammographic technique, 19 165 Please send: copies of the Breast Cancer Digest. These copies will be used as follows: more information about NCI’s Breast Cancer Education Program which in- cludes a slide-tape presentation, pamphlets, poster, and a series of three articles a listing of other cancer information/educational materials Name Organization Street address City State Zip Telephone Please send: copies of the Breast Cancer Digest. These copies will be used as follows: more information about NCI’s Breast Cancer Education Program which in- cludes a slide-tape presentation, pamphlets, poster, and a series of three articles a listing of other cancer information /educational materials Name Organization Street address City State Zip Telephone Others can benefit from relevant information which isn’t included in this edition. If you have any information to add or any general suggestions, please let us know. Comments Name Organization Street address City State Zip Telephone Mr. Robert W. Denniston Office of Cancer Communications National Cancer Institute Building 31, Room 4B39 Bethesda, Maryland 20205 Mr. Robert W. Denniston Office of Cancer Communications National Cancer Institute Building 31, Room 4B39 Bethesda, Maryland 20205 Mr. Robert W. Denniston Office of Cancer Communications National Cancer Institute Building 31, Room 4B39 Bethesda, Maryland 20205 £032 A Aw U.C. BERKELEY LIBRARIES (022360331