key: cord-0813221-9dk5ab8d authors: Sunilkumar, M. M.; Finni, Charles G.; Lijimol, A. S.; Rajagopal, M. R. title: Health-Related Suffering and Palliative Care in Breast Cancer date: 2021-11-16 journal: Curr Breast Cancer Rep DOI: 10.1007/s12609-021-00431-1 sha: 73f4541f865ed299a58c7054f503d09217fe820a doc_id: 813221 cord_uid: 9dk5ab8d PURPOSE OF REVIEW: Breast cancer continues to be the most frequently diagnosed cancer in women and the leading cause of cancer death worldwide. By the suffering that it causes in various domains of life, breast cancer seriously impacts the quality of life of affected individuals and causes a major burden of suffering in the community. The objectives of the review were to understand the health-related suffering in patients with breast cancer and to identify the scope of palliative care in improving the quality of life of patients with breast cancer. RECENT FINDINGS: Breast cancer causes suffering in physical, psychological, social, financial, and spiritual domains of the lives of the patient and family. Management of breast cancer with surgery, chemotherapy, and radiation could have adverse effects, such as pain, nausea and vomiting, fatigue, shortness of breath, depression, and constipation. Both cancer and its treatment can impact the psychosocial and spiritual well-being of the patient and family members. Integrating palliative care into existing breast cancer treatment programs seems to be the best approach to diminish these sufferings. SUMMARY: In addition to pain and other physical symptoms, breast cancer can cause major psychological, social, and spiritual suffering. In the context of developing countries, out-of-pocket expenditure can cause major financial destruction which can impact generations. Integration of palliative care to breast cancer treatment is essential. Breast cancer is the most frequently diagnosed cancer in women and the leading cause of cancer-related death in women worldwide [1, 2] . While the incidence rate of this disease tends to be higher in high-income countries, lowto-middle-income countries (LMICs) shoulder a disproportionate mortality burden from this disease in part because of their higher population and the late presentation of the disease in these settings. It has been suggested that over 19.5 million new cases of breast cancer will be diagnosed among women globally by the year 2024, of which 55% will occur in LMICs [3] . Most breast cancer patients (50-80%) in LMICs present with advanced or metastatic disease, as opposed to high-income countries where the figure is much lower (10-15%) . This finding is often associated with fewer treatment options, higher costs, no cure, and more suffering [4] . Women's suffering can be increased in all domains of life due to breast cancer. The health-related suffering of breast cancer has different facets such as physical, psychosocial, financial, and spiritual [5] . This warrants a methodical approach to the assessment of each specific issue, by a welltrained and organized clinical team including physicians, nurses, and different therapists. The patient may have undergone surgery, chemotherapy, and/or radiation therapy which may have caused side effects such as pain, nausea, vomiting, fatigue, shortness of breath, constipation, hair loss, skin problems, and lymphedema [6, 7] . Treatment can also impact the psychosocial well-being of the patient and family members. Patients diagnosed as having progressive breast cancer and their caregivers have complex needs that should be assessed and managed properly to reduce the severity of suffering, distress, and deterioration in the quality of life of patients and caregivers. This mission needs the complete commitment of an interdisciplinary approach to palliative care [8] . In most parts of India, cancer treatment is paid for out of pocket (OOP), which can push families to below the poverty line [9• ]. Out-of-pocket (OOP) expenditures account for more than three-quarters of cancer spending in India. Catastrophic health expenditure (CHEs) affects not only the patient, but also the family as a whole [10] . A cross-sectional study in India found out that about 84% of the families with patients diagnosed with breast cancer are susceptible to catastrophic health expenditure (CHE) and nearly 50% of the families had met with financial hardships during cancer treatment [9•] . The notion of suffering in a medical context has been expounded upon by Casell in1982. Casell distinguished that suffering is an experience of the whole person, while medicine, by and large, tends to focus only on the body [11] . There are often different treatment modalities, all with a similar response to treatment and survival rates, but that vary with their physical and emotional consequences for the woman. Psychological, sexual, and physical dysfunction caused by diagnostics and treatment of cancer can seriously impact the women's quality of life adversely. Not to recognize a human being as an entity of body, soul, and spirit can prevent the easing of suffering that patients may face. Physical suffering related to breast cancer comprises pain, breathlessness, fatigue, breast ulceration, changes in body appearance, menopause-related symptoms, fertility, and other reproductive problems and lymphedema [8, 12, 13 ]. Pain is not a common symptom at the early stage of breast cancer but as it advances, advanced disease can lead to pain by the involvement of muscles and ribs [14] . The treatment of pain can be done using the WHO analgesic ladder and addressing the psychosocial and spiritual concerns of the patient. In addition, interventional pain management can also be used when appropriate. Persistent pain after breast cancer treatment (PPBCT) is an important issue that needs to be addressed as it affects about 25-60% of patients [15] . Whether patients are treated with surgery alone, or in combination with radiotherapy, results in roughly the same amount of pain because both involve damage to nerves which then cause a variety of problems like pain, numbness, and reduced movements of arm, hand, and shoulder [16] [17] [18] . This pain can become persistent, potentially causing lifelong suffering [19, 20] . The main factors implicated in the development of chronic post-mastectomy pain include injury to intercostobrachial nerves, surgical scar, neuroma formation, emotional factors, and phantom breast pain [19, 21] . The application of morphine locally before wound closure has been shown to reduce the development of severity and incidence of chronic post-mastectomy pain [22] . Various treatments have been proposed for the treatment of persistent post-mastectomy pain which includes amitriptyline, venlafaxine, and 5% lidocaine patches [23] [24] [25] . A doubleblind randomized control study with pregabalin 75 mg twice daily, when started the morning of surgery and continued for 1 week, has shown that this regimen reduces chronic postmastectomy pain [26 •] . Irrespective of the mode of treatment or how the body looks subsequent to treatment, a woman is likely to feel differently about her physique after the management of breast cancer. Most women are concerned with their body image, and breast cancer surgery can affect a woman's self-confidence and relationship with others, especially with her spouse [12] . Breast cancer treatment like chemotherapy, hormonal therapy, or ovarian suppression can lead to menopausal symptoms such as hot flushes, night sweats, vaginal dryness, palpitations, mood changes, joint pain, and changes to skin and hair [27] . Most women find it difficult to cope or adapt to these issues with resultant worsening of their quality of life. Menopausal symptoms are usually severe due to the sudden and quick reduction in estrogen. There is a lack of scientific evidence about the effectiveness of complementary therapies [28] . For patients with mild vasomotor symptoms, behavioral modification and yoga may be helpful, while newer antidepressants are likely to be effective in moderate to severe cases. In refractory cases, stellate ganglion block may be used [28] . Local vaginal moisturizers, and low-dose estrogen creams in patients with refractory symptoms, can help in the management of most urogenital symptoms. Early menopause can also cause decreased bone mineral density; this can be improved with weight-bearing exercises, calcium, vitamin D, and bisphosphonates. [28] . Chemotherapy can adversely affect the reproductive function of women [29] . Nearly 3% of breast cancers occur in women during the reproductive age of 25-35 years [30] . These patients should consult reproductive experts to discuss issues around fertility and menopause prior to initiation of chemotherapy. Fertility preservation is possible by removing and preserving ovarian tissue or mature oocytes prior to chemotherapy or by preserving fertilized embryos for future use [31] . Lymph node surgery and radiation therapy can disrupt lymphatics and result in lymph stasis and lymphedema [32] . This can affect the treated side in the hand, arm, underarm, chest, and upper back causing discomfort and swelling [33] . Lymphedema can also lead to psychosocial issues that negatively affect breast cancer survivors' day-to-day lives [34, 35] . Women who develop lymphedema have higher health care costs than those without it, and this could also negatively affect their job and day-to-day life [36] . Lymphedema can often be managed with massage, physical therapy (including weight-bearing exercises), and, if needed, compression garments. The diagnosis of breast cancer is a shocking news for most women, after which, the emotional response ranges anywhere from despair to rage. For some patients, there can be deterioration in psychological well-being [37] , with symptoms of post-traumatic stress [38] that can persist for over a year. The psychological issues faced by such women include: One of the most common psychological issues faced by women with breast cancer is depression [39] , which is often driven by the fear of cancer recurrence or metastases [40] . Anxiety Anxiety is typically associated with cancer and it is the most predominant psychological symptom perceived by cancer patients [41] . A study by Ashbury et al. showed that more than half of the patients recalled experiencing anxiety within 2 years of treatment of cancer [42] . This tends to be worse with stage and more intensive treatment. Patients diagnosed with breast cancer experience physical symptoms and psychosocial distress that negatively impact their quality of life (QOL). QOL usually involves various domains including physical functioning, psychological well-being, and social support [43] . Pain is the most common physical symptom impacting their quality of life [44] . Gangane et al. in a 2017 study of breast cancer patients in central rural India found that young age, lack of education, and being without a partner were associated with a lower QOL while employment, higher monthly family income, higher self-efficacy, and social, financial and environmental support were associated with a higher QOL [45] . The physical, psychological, and emotional well-being of breast cancer patients can be improved by physical activity thereby improving the quality of life of these patients [46] . Psychological resilience is the capacity of a person to protect his/her psychological health when faced with difficulty such as cancer diagnosis in their life. Psychological resilience affects diverse aspects of health-related quality of life in breast cancer patients. Patients with more resilience have a notably better quality of life in almost all domains [47] . Strategies like stress management, resilience training, meaning-making interventions, and self-efficacy may improve patients' resilience [48] . According to WHO, "palliative care is an approach that improves quality of life of patients and their families facing the problems associated with life threatening illness through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems such as physical, psychosocial and spiritual." [49] As WHO pointed out, palliative care gives relief from pain and other health-related symptoms and sufferings. Palliative care aims neither to hasten nor postpone death and it considers dying as a normal process in life. Palliative care uses a team approach to address the needs of patients and their families, including bereavement counseling if indicated, enhances the quality of life, and may also positively influence the course of illness. Palliative care is not just end-of-life care, it is applicable from the diagnosis of an illness, in conjunction with other therapies that are planned and implemented to prolong life, such as chemotherapy or radiation therapy [49] . Palliative care is often a low priority in low-and middle-income countries [50] . Zimmerman et al. in a cluster randomized trial looked at providing early palliative care in metastatic cancer, including breast cancer. They demonstrated immediate improvement of satisfaction with care but improvement in quality of life was most marked at 4 months of starting palliative care intervention [51] . Vanbutsele et al. similarly found, in a randomized control trial among advanced cancer patients, that the early and systematic integration of palliative care into cancer care resulted in significantly improved quality of life at 12 and 18 weeks of regular palliative care interventions [52 ••] . Indeed, Rugno et al. also found that earlier consultation with a palliative care team lowered rates of depression and improved quality of life and survival [53] . Failure to provide palliative care during cancer treatment can lead to increased non-compliance and worsened outcomes, thereby diminishing the value of therapeutic interventions [54] . The main emphasis of palliative care is on the prevention and management of breast cancer symptoms and the side effects of treatment, along with psychosocial and spiritual support. Palliative care can improve the quality of life of patients with breast cancer and their families through the management of health-related suffering. It concentrates on a holistic approach and encompasses a variety of services for patients and their relatives. It can be initiated as early as the time of diagnosis and continue through to end-of-life care and bereavement. 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