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Keywords:

  • breast cancer;
  • African American;
  • clinical trials;
  • agency;
  • culture;
  • class;
  • spirituality;
  • survivor;
  • advocate

Abstract

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES

BACKGROUND

This article discusses the sometimes unique presentation and course of breast cancer in African-American women and the impact these differences have on the perception of breast disease among African-American women.

METHODS

The project described represents the thoughts of many African-American breast cancer survivors, as summarized by three breast cancer survivor-advocates who work through very different national organizations, each of whom has vast experience working directly with African-American breast cancer survivors and their families.

RESULTS

In addition to discussions of compelling considerations that have an impact on survivor access, such as agency, culture, and class, other important access questions are raised for research scientists and clinicians that have an impact on the prevention, screening, and detection and treatment of breast cancer in African-American women as well as their accrual to clinical trials.

CONCLUSIONS

To eradicate ethnicity-related disparities in breast cancer outcomes for African-American women, it is important for the medical community (clinicians and research scientists) to develop active partnerships with African-American and other breast cancer survivor-advocates in order to establish effective breast health awareness and breast cancer treatment programs and to develop meaningful breast cancer research programs. Cancer 2003;97(1 Suppl):324–8. © 2003 American Cancer Society.

DOI 10.1002/cncr.11013

For the purposes of this article, breast cancer survivors are defined as women who have been diagnosed with breast cancer. The word consumer often is used as an alternate to the word survivor; however, many also include in their definition for consumer the families and loved ones of survivors. Survivor-advocates are defined as breast cancer survivors who work in partnership with a community-based group or organization of survivors and who are committed to the eradication of breast cancer, as manifested in their involvement in any number of areas, including 1) reaching out to and educating breast cancer survivors; 2) providing emotional support to survivors; 3) consultation with clinicians or other providers of direct services to breast cancer survivors; 4) working to secure funding for breast cancer research; 5) participating in the setting of breast cancer research priorities; 6) participating in the peer review of breast cancer research proposals; and 7) organizing support for and/or informing public policy that ensures access to screening, detection, and treatment resources and/or advances the eradication of breast cancer. Working in partnership with a community-based group or organization of survivors is an essential, although not sufficient, requirement for the definition of a survivor-advocate, because such involvement better insures that the survivor-advocate is operating out of the breast cancer experience of the larger survivor community and is not limited to her own experience of the disease.

The Presentation of Breast Cancer in African-American Women

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES

We, as African-American breast cancer survivor-advocates who are in regular conversations with patient populations undergoing treatment for active disease, are acutely aware of the unique patterns that characterize breast cancer among African-American women. National, population-based statistics have documented the higher mortality rates and younger age distribution for breast cancer among African Americans. Despite their overall lower incidence of breast cancer, African Americans have substantially higher breast cancer mortality rates compared with white Americans. The Surveillance, Epidemiology, and End Results (SEER) Program reports 5-year relative survival rates for breast cancer of 71% for African-American women and 87% for white American women.1 For women age < 45 years, breast cancer incidence is higher for African-American women compared with white women.1 In addition, there are substantial data indicating that breast cancer is a biologically more aggressive disease among young women, and subset analyses of SEER-based statistics have demonstrated that young African-American women with breast cancer are at particularly high risk for more virulent disease.2

Discussion of the Difference in Breast Cancer Mortality in African-American Women

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES

It is well known that poverty rates are significantly higher among African Americans compared with white Americans. It also is accepted commonly that these economic disadvantages result in impaired access to healthcare in general and, in particular, lead to the more advanced breast cancer stage distribution that is seen among African-American women. Barriers to breast cancer detection and treatment clearly will worsen outcome; however, caution should be exercised in oversimplifying the ethnicity-related outcome disparities as purely a matter of dollars. Socioeconomic disadvantages are comprised of a complex association of lifestyle, nutritional, and environmental factors. Each of these factors requires scrutiny in the effort to understand the impact of breast cancer on African-American women.

Despite overall improved breast cancer surveillance in this country, mortality rates continue to rise among African Americans of all age groups.3 Furthermore, attempts to explain the outcome disparity by controlling for socioeconomic factors have been inadequate. Eley et al.4 found that, even after adjusting for these variables, approximately 25% of the ethnicity-related differences in breast cancer mortality remained unexplained in their landmark report, Racial differences in survival from breast cancer: results of the National Cancer Institute Black-White Cancer Survival Study. Other investigators have evaluated population-based data and found that, even among women who are diagnosed with early-stage disease, breast cancer mortality remains higher for African-American women.5 Potentially even more disturbing is a report indicating that healthcare providers do not consistently offer optimal treatment alternatives to African-American patients who have breast cancer compared with white patients who have breast cancer.6

African-American breast cancer survivor-advocates have a heightened awareness of these outcome disparities and are driven to challenge the medical community with questions framed from their unique perspective. These questions are discussed below.

Perception of Breast Cancer among African-American Women

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES

Differences in the presentation of breast cancer among African-American women have enormous implications on how African-American women view breast cancer and how they respond to prevention efforts, screening and detection opportunities, and treatment recommendations and whether they participate in clinical trials. Based largely on anecdotal information, African-American women at all income levels, including those without active disease, worry that these differences in the presentation of breast cancer in African-American women mean that it is a different disease. Worse, many believe that current research to eradicate breast cancer is not focusing on the breast cancer with which African-American women are diagnosed. These perceptions reinforce fatalistic beliefs about cancer that may result in failure to respond to symptoms, refusal to participate in screening and detection efforts, poor follow-through with treatment recommendations, and a failure to participate in clinical trials.

The differences in the presentation of breast cancer in African-American women pose fundamental and important questions for the scientific research community to consider: 1) Are the causes of breast cancer in African-American women different from the causes of the disease in other women? 2) Are African-American women biologically different from other women, so that they respond to the same disease in a different way? 3) Do African-American women have the same breast disease as other women?

Questions for the Research and Clinical Communities: Prevention

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES

Individual efforts to prevent breast cancer require identifying the risk factors for breast cancer and knowing which specific lifestyle behaviors to change. Accurate information is essential to this effort; however, changing lifestyle behaviors is much more difficult, because these behaviors likely are linked to cultural beliefs about illness and disease and/or community values and norms. Complicating the difficulty may be the task of communicating this information across culture and class to those who may have different values and/or who may lack the financial capacity to implement them, especially in the context of the day-to-day realities of survival.

Here are some important questions on preventing breast cancer among African-American women that need to be addressed: 1) To prevent breast cancer in African-American women, what are the risk factors for breast cancer that are more prevalent in the lifestyle behaviors of African-American women? 2) What creative, culturally appropriate interventions can be developed to address at-risk lifestyle behaviors in African-American women? At what age should these be started? 3) Given the perception that breast cancer, as manifested in some African-American women, may have some of the characteristics of the BRCA1/BRCA2 genes, should African-American women be included in the eligibility protocol for genetic testing?

Questions for the Research and Clinical Communities: Screening and Detection

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES

One of the most important issues that has an impact on whether people access screening and detection services, as well as their response to treatment recommendations, is the sociologic term, agency. Agency is having the sense that one has the capacity to manage one's own life. It is knowing that things do not just happen to you, because you are able to make choices and take action. In the African-American community, cancer is perceived by many as a death sentence. Participating in screening and detection activities that may result in a diagnosis of breast cancer can threaten even a well-established sense of agency. Although having accurate information, well-trained clinicians, and cutting-edge treatment options available are extremely important, for women to participate voluntarily and regularly in screening and detection activities requires that they also have a sense of agency. Anecdotal evidence suggests that people with low income levels and/or a history of discrimination or oppression often come to the healthcare setting with a low sense of agency. When one does not have a strong sense of agency, fatalistic beliefs about illness and disease are reinforced. Without effective interventions that support a healthy person's capacity to access and navigate the healthcare system, such individuals are likely to avoid screening opportunities or to drop out of detection activities prior to diagnosis. Clinicians, like teachers, have some ethical responsibility to provide clinical services in a way that empowers their patients' development of agency.7

Given the differences in breast cancer morbidity and mortality in African-American women, the following questions emerge: 1) What age guidelines should be established for the baseline and annual breast cancer screening of African-American women? 2) Because African-American women often are told that their breasts are so dense that their mammograms are harder to read, should breast cancer screening for African-American women include a clinical breast examination with each mammogram? Should there also be a guideline for a routine ultrasound? 3) How can we better insure that low-income women have access to other detection options, such as needle biopsy and stereotactic breast biopsy?

Questions for the Research and Clinical Communities: Treatment

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES

Several factors have an impact on whether and when African-American women seek treatment and what course of treatment they choose. Important variables to consider are cultural beliefs about health and disease, class (financial accessibility), agency, and religious beliefs.

A patient's spiritual beliefs can have an impact on treatment decisions and behaviors. For example, some African-American women believe that God is all-knowing and omnipotent and that He can send misfortune, such as disease, as a test of faith, in an effort to judge one's worthiness to join Him in the afterlife. This belief is complicated further by a belief that God does not give you more than you can handle and that, if one lives one's life correctly, God will intervene, here or in the afterlife. These beliefs can manifest themselves in the clinical setting in different ways: ways that often seem counterintuitive. For example, they can reinforce fatalistic beliefs about illness and disease and further erode a survivor's sense of agency. Such beliefs often are addressed better by a member of the healthcare team meeting with the survivor and her pastor or other religious advisor in an effort to gain a better understanding of the disease and treatment choices in the context of the pertinent religious beliefs.

The following questions emerge when thinking about how to improve the quality of treatment that African-American women receive: 1) How will we better educate African-American women about the range and implications of treatment choices and provide them with the support to demand them? 2) How can we better insure that clinicians who work with African-American women offer the quality of treatment that reflects the findings of current research? 3) If routine screening identifies an anomaly in an African-American woman, and if breast cancer in African-American women is more aggressive than in other women, then should the course of treatment be different? 4) How will the financial barriers to appropriate treatment for low-income women be addressed?

Questions for the Research and Clinical Communities: Clinical Trials

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES

Clinical trials are a crucial aspect of the scientific inquiry that lead to new, more effective medical response to diseases, such as breast cancer. It has been reported that only 3% of American women have ever participated in a clinical trial; for African-American women, that number is 0.005%.

Through oral and written history, many if not most African Americans have known about the horrors of the Tuskegee Syphilis Study for three generations. That study and other, less well-publicized medical research that abused African Americans and/or other people of color have resulted in a strong cultural norm in the African-American community not to trust and certainly not to participate in medical research.

The fact that African Americans are reluctant to participate in clinical trials has serious consequences. First, the cutting-edge treatment choices often are available only through clinical trials. Second, although data from the Human Genome project support the fact that, biologically, we are 96% the same under the skin, given the perception that breast cancer manifests itself differently in African-American women, it is important to determine whether a particular drug works differently. Third, we will never be able to treat or eradicate breast cancer if scientific inquiry cannot move forward, a process that relies in part on clinical trials.

It is extremely difficult for scientists to establish the trust that is required to implement an effective outreach program that results in the accrual of African Americans into clinical trials. Here are some guidelines that may help: 1) involve members of the community in the proposal development process; 2) write your plan for entering the community into your grant time line and budget; 3) enter the community through existing, highly respected, community-based organizations; 4) write community-based organizations into your proposal, including your budget; 5) when possible, involve and/or train community members in implementing the research; 6) listen to the community and collaborate with it in order to access other needed health or social services; 7) report the research findings to the community, especially the implications, using language the community understands and media they respect; 8) acknowledge the community in your publications; and 9) maintain an on-going relation with the community.

When considering how to increase the number of African-American women who choose to participate in clinical trials, multiple questions arise: 1) How can we educate more African Americans about the value of clinical trials? 2) How can we help African Americans better distinguish trials that are based on good science? 3) How can we let more African Americans know which clinical trials are open and how to access to them? 4) How can we make sure that primary care clinicians and other physicians who treat African Americans know more about the value of clinical trials and how to provide their patients with access to them? 5) Clinical trials often are conducted by medical research centers that too often results in poor geographic distribution, which can be a barrier to access: How can we remove these barriers for African Americans and others who would like to participate in clinical trials? 6) Often, there are additional financial costs to participating in clinical trials that are not covered by third-party insurers, which can be a barrier to access: How can we make sure that these costs are not barriers to participation for low-income people?

CONCLUSIONS

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES

Breast cancer survivor-advocates from the African-American community possess unique insights regarding the complex cultural issues that may be hindering optimal implementation of best healthcare practices among this subset of the population. By virtue of their personal healthcare experiences, they are attuned to the psychosocial impact as well as the physical impact of breast cancer diagnosis and treatment. By virtue of their life experiences and ethnic identity, they have a deeper understanding of barriers between the African-American patient population and the medical healthcare delivery system. By definition, these breast cancer survivor-advocates also have the motivation to integrate these insights and experiences into support for culturally sensitive screening programs and clinical trials. Therefore, we urge the medical community to develop active partnerships with African-American breast cancer survivor-advocates.

It is clear that a great deal of clinical research remains to be done in the effort to explain and eradicate ethnicity-related disparities in breast cancer outcome. We believe that these medical and survivor-advocate partnerships are essential in establishing effective breast health awareness programs as well as meaningful breast cancer research programs that cross all socioeconomic and cultural boundaries.

REFERENCES

  1. Top of page
  2. Abstract
  3. The Presentation of Breast Cancer in African-American Women
  4. Discussion of the Difference in Breast Cancer Mortality in African-American Women
  5. Perception of Breast Cancer among African-American Women
  6. Questions for the Research and Clinical Communities: Prevention
  7. Questions for the Research and Clinical Communities: Screening and Detection
  8. Questions for the Research and Clinical Communities: Treatment
  9. Questions for the Research and Clinical Communities: Clinical Trials
  10. CONCLUSIONS
  11. Acknowledgements
  12. REFERENCES
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