Over the years, a multitude of research data has confirmed that occurrence rates for breast cancer are lower for minority women than for Caucasian women. In fact, Native American women have a lower incidence rate for this disease than most other racial and ethnic groups. [INSERT STATISTICS FROM OMHC] These statistics would seem to indicate that minority women have an advantage over white women in terms of reduced breast cancer risk.
But a look at survival rates for this disease reveals a starkly different picture. Recent studies by Gulattee1, Fulton, Rakowski and Jones2 and others have shown that women from racial and ethnic minority groups have a substantially higher relative breast cancer mortality rate than white women. Skinner and associates3 cite data from the National Cancer Institute demonstrating that the five-year survival rate for breast cancer is 81% for Caucasian women, compared to only 64% for African-American women. Furthermore, other research has shown that the five-year survival rate for Hispanic women is 4% lower than for non-Hispanic white women2 and that Native American women have only a 53% five-year survival rate compared to Caucasian women.4
These statistics paint a bleak picture. Minority women are less likely to contract breast cancer than white women—yet they are far more likely to die from the disease. Ironically, one reason for this disparity is the fact that, because the occurrence rates for women of color are lower, health providers often do not consider breast cancer an important issue for minority populations. Therefore, breast cancer in minority women is less likely to be diagnosed in the disease’s earlier, more treatable stage.
For example, in 1993 the National Cancer Institute noted that “[because of low occurrence rates], it may not [italics mine] be a high priority [for health care providers to give minority women] baseline mammograms. Referrals for breast lumps are sometimes prioritized as low as a ‘seven’ on the Indian Health Service’s priority list, which can result in a year’s delay for referrals for clinical breast examination.”5
While a number of different treatments for breast cancer exist, the options most frequently offered to patients are either a lumpectomy with radiation therapy to the breast and lymph node area, or a mastectomy. (Chemotherapy may be prescribed along with either treatment.) Although studies have found both treatments to be equally effective6, removing the entire breast is a far more radical and disfiguring procedure that can be extremely traumatic for many patients.
In 1999, I conducted a study examining the life patterns of Native American women who had experienced breast cancer. For this project, which was the basis of my doctoral dissertation at the University of Minnesota in Minneapolis, I conducted in-depth interviews with 10 Native American women, on an average of three times each. First, the unique life pattern of each individual woman was chronicled; then I looked for commonalities among the group’s life experiences.
The participants were not initially asked about their breast cancer experience. The primary interview question was simply: “Tell me about the most meaningful people and events in your life.” Nevertheless, each of the women reported that her breast cancer was one of the most important events in her life.
One of the most surprising findings was that all 10 of these minority women had undergone either single or double mastectomies. None had been treated with a combination of lumpectomy and radiation therapy, which would have allowed them to keep their breasts.
Moreover, not only did each of these 10 women have a mastectomy but, when they spoke of relatives and [Native American] friends who had experienced breast cancer, all of these people except one had also had mastectomies.
While the study was qualitative, and therefore not intended to be statistically valid, this finding was disturbing. Moreover, it could not be attributed to a local phenomenon. These women did not come from just one or two communities. I deliberately sought participants from different parts of the country, to protect their anonymity. Because I chose participants from within a radius of up to 260 miles from me, some of them lived as far away as 520 miles from each other.
The results of this study raise some troubling questions about breast cancer treatment options for minority women. Do health care providers recommend mastectomy as the treatment of choice more often for women of color than they do for Caucasian women? If so, why? What are some of the factors contributing to minority women’s decision to have a mastectomy even though this treatment method is much more mutilating than a lumpectomy with a lymph node dissection and radiation therapy? Are minority women offered enough of a choice between these two procedures? Do they have enough information about the different treatment options available to them?
As the 10 Native American women I interviewed shared their feelings about having had mastectomies, it became clear that several of the participants were indeed traumatized by the experience. “Sarah” (not her real name) found a lump in her breast and had a mastectomy several weeks later. Within a year, cancer appeared in her other breast, resulting in a second mastectomy. Sarah related how she mourned the loss of her breasts. She also suffered from depression after the mastectomies.
“Cheryl” discovered a lump in her breast about the size of the end of her finger. The biopsy revealed a “multifocal carcinoma.” She was referred to an oncologist in a larger town who told her she had a 95% chance of eventually having cancer in her other breast as well. Cheryl had a mastectomy in her right breast and, after being pressured by family members, also had her left breast removed as a preventive measure. Nearly five years later, she continues to mourn the loss of her breasts. Cheryl regretted not getting “a second and possibly third medical opinion.” She still views her breastless body as repulsive.
At age 46, “Martha” was diagnosed with breast cancer when she had a physical examination after being hired for a job working for the federal government. Martha feels “unbalanced” without the breast that was removed. She continues to grieve over her loss.
“Callie” had her first mammogram when a friend suggested that the two of them go together to have breast cancer screening. Callie’s mammogram looked suspicious, and a biopsy confirmed a malignancy. Although Callie was given the option of either a mastectomy or a lumpectomy with chemotherapy and radiation, she chose the mastectomy because she felt “it would be easier on the whole family” and because a close friend had recently had several lumpectomies and within a few months had to have both breasts removed. After the mastectomy, Callie was unhappy with wearing the breast prosthesis and the special bra to accommodate the prosthesis. She said it was uncomfortable and very hot in summer, but she felt that people stared at her if she didn’t wear it.
These accounts suggest that minority women and their families may not be receiving enough information about what the mastectomy procedure involves, and about the effectiveness of alternative methods, to make well-informed decisions about which breast cancer treatment option to choose—if they are indeed presented with a choice of options in the first place.
Clearly, more research is needed in this area. The most critical questions are: Do minority women diagnosed with breast cancer receive a greater proportion of mastectomies than breast cancer patients in the general population? Are Caucasian women more likely to be treated with lumpectomies and lymph node dissections than women of color? And if so, what are the reasons for these treatment disparities?
Beyond this, however, we also need to examine broader issues. Who makes or strongly influences minority women’s treatment decisions? What information do women have prior to the crisis time when a decision needs to be made? What role do nurses play in this scenario—and what role should they be playing? Is more intervention by nurses needed to increase minority patients’ chances of being fully informed and treated fairly? These are questions to which we, as professional nurses, must search for answers.
1. Gullattee, M. (1999). “Breast Health and Culture: Issues for Nursing Practice.” Georgia Nurse, 59 (1), 18-20.
2. Fulton, J., Rakowski, W. and Jones, A. (1995). “Determinants of Breast Cancer Screening Among Inner-City Hispanic Women in Comparison with Other Inner-City Women.” Public Health Reports, 110 (4), 476-482.
3. Skinner, C., Sykes, R., Monsees, B. and Andriole, D. (1998). “Learn, Share and Live: Breast Cancer Education for Older, Urban Minority Women.” Health, Education and Behavior, 25 (1), 60-78.
4. Palos, G. (1994). “Cultural Heritage: Cancer Screening and Early Detection.” Seminars in Oncology Nursing, 10 (2), 104-113.
5. National Cancer Institute (1993). What You Need to Know About Cancer. National Institutes of Health Publication No. 94-1563. Revised April 1993.
6. Thomas, S. and Greifzu, S. (2000). “Breast Cancer.” RN, 63 (4), 41-47.