Real Talk about Breast Cancer
Breast cancer is one of the most diagnosed cancers among African American women, yet research into their experiences with treatment lags behind. In particular, few studies have examined how African American women cope with fatigue, the most common side effect of treatment. To help fill the gaps, my research colleagues and I explored how fatigue affects African American women undergoing breast cancer treatment.
When it comes to breast cancer and African American women, fatigue coupled with fear are a significant part of the experience, with many African American women viewing breast cancer as an automatic death sentence. When we examine the mortality rate of breast cancer among African American women compared with women from other ethnic and racial groups, this perception is understandable. The American Cancer Society’s Breast Cancer Facts and Figures 2013–2014 report indicates that African American women had a lower breast cancer incidence rate than non-Hispanic white women; however, that same report states that African American women with breast cancer have a higher mortality rate. Many factors contribute to this racial disparity, including inadequate or lack of health insurance, screening behaviors, obesity, and a genetic component that results in more aggressive tumors.
A fatalistic view of breast cancer leads some African American women to delay follow-up visits or even avoid obtaining mammograms, which can lead to them being diagnosed at a later stage and having a worse prognosis. Then fear can turn into reality. Of all types of cancer diagnosed in African American women, breast cancer is the second leading cause of death. The five-year breast cancer survival rate for African American women was 79% compared with 92% for their white counterparts.
As health care practitioners, we can help improve these outcomes. We play a major role in educating African American women about the importance of early screening, dispelling myths associated with breast cancer, and reducing fatalism. To do this effectively, we need to understand how breast cancer affects the lives of African American women and the ways they cope with a breast cancer diagnosis, which begins at diagnosis and continues through treatment and beyond.
Recognize the Impact of Fatigue
Research suggests that African American women may experience more fatigue than others with breast cancer, a condition that I’ve also observed in my own research. Rather than ordinary fatigue, they feel cancer-related fatigue—a form more distressing and severe and less likely to be relieved by rest.
For the women in our study, cancer-related fatigue began soon after their second chemotherapy treatment or midway through radiation. Symptoms worsened as treatment progressed, affecting their daily function. Their fatigue made it difficult to engage in the mental processes needed to complete simple tasks, make routine personal decisions, and balance work and health responsibilities.
Though our research involved a limited number of participants, our findings offer insights that can help health care practitioners become better prepared to treat African American women with breast cancer and address their cancer-related fatigue symptoms.
Encourage Open Communication
Interactions with health care practitioners are crucial to alleviating the fatigue African American women experience during breast cancer treatment. We can ask the women to rate their level of fatigue on a scale to gauge its severity, but the best approach is to ask them to describe it, and explore the fatigue experience from a qualitative perspective. For example, how does the fatigue make them feel, and what are they doing about it?
In our study, the response was “real talk,” a common term in the African American community to describe how people speak candidly and without reservation about their feelings. The women used words like these to describe how cancer-related fatigue made them feel: disconnected, depressed, tired, burned out, weak, broken down, and washed out.
Recognizing the terminology African American women use allows health care practitioners to determine the medical implications of the words and helps build understanding and trust between patients and their nurses and doctors. It is equally important that health care practitioners convey empathy and validate what they hear, including what African American women are conveying about their fatigue symptoms. We need to acknowledge the fatigue African American women experience and have open communication with them so their symptoms can be made more tolerable and manageable.
Consider Alternative Treatments
Many of the African American women in our study shared with us that the medications they were prescribed to combat fatigue were of limited benefit or made them feel worse. In contrast, choosing to exercise (such as walking) helped relieve their symptoms. Despite feeling too weak and tired to exercise, the women discussed how they pushed through the fatigue because they knew exercise would be beneficial to their health. This is consistent with past research indicating that walking has a positive effect on fatigue related to breast cancer. With permission from their physicians, the women also turned to alternative treatments, such as vitamins and supplements, herbal remedies, natural teas, and acupuncture.
Their experiences tell us that medication is only one option available to relieve fatigue. As health care practitioners, we should consider incorporating complementary therapies that may offer benefits to African American women undergoing breast cancer treatment.
Understanding the Power of Prayer and Community
More than anything else, faith and prayer helped the women in our study cope with breast cancer’s overwhelming effect on their lives. Their spiritual identity made both their diagnosis and cancer-related fatigue seem more manageable.
No woman should go through breast cancer alone, and studies show that African American women rely on a wide social network that includes their church, family, friends, and faith-based, Afro-centric support groups. Joining a group of women who have similar backgrounds and experiences can help spiritually, psychologically, and emotionally. Afrocentric support groups also offer a venue where nurses and oncologists can educate women about breast cancer and fatigue related to treatment. Other health care practitioners, such as physical therapists and nutritionists, should be invited to the support groups for a more comprehensive approach.
Provide Culturally Appropriate Care
Addressing racial disparities and quality of life issues for African American women with breast cancer calls for culturally appropriate care as well as effective outreach in the African American community. Health care practitioners who are part of the community and culture may better understand how to access and educate women about breast cancer screening and treatment.
Research studies support the idea that African American women are more comfortable relating their experience with breast cancer to health care practitioners who are from their same ethnic, racial, or cultural background. In a previous study I conducted, the African American women were more comfortable with breast cancer education and sharing of health tips when they heard them from African American health care practitioners and their peers. Unfortunately, the number of African American health care practitioners today is low. To provide culturally sensitive breast cancer education and care for African American women, we need to encourage more African Americans to become oncology nurses and enter related health care fields.
Breast cancer continues to take its toll on African American women, but the outlook is improving. Nurses and other health care practitioners have made significant strides in educating African American women about the disease and decreasing fatalistic views. Since 2000, screening has increased, and breast cancer is being detected earlier. Further research and better understanding of the fear, fatigue, and coping strategies of African American women with breast cancer will help us continue to build on this progress and provide better care.
Phyllis Morgan, PhD, FNP-BC, CNE, FAANP, is a nurse educator, certified family nurse practitioner, and researcher focused on African American women’s health issues. She is the coordinator for the Family Nurse Practitioner specialization at Walden University and a nurse practitioner in northern Virginia for Minute Clinic.
