Our findings suggest that risk perception is greatly influenced by family history and burden of disease for both white and black women. Roughly 80% of both groups believed family history played a role, which is contrary to previous reports that found black women with a family history were less likely than whites to relate family history to breast cancer (Audrain, et al., 1995
; Hughes, et al., 1996
). The fact that women in this study are participating in the Sister Study may, in part, account for this difference since recruitment materials for that study cite the enhanced risk of women with an affected sister. However, burden of disease in the family was also associated with higher risk perception among both white and black women. This included having more than one affected FDR, an affected mom, young age at diagnosis, death from breast cancer and a relative’s diagnosis within the past 4 years. These findings reveal that the “lived” familial breast cancer experiences are at the core of risk representation for many women.
Most women in the study had a heightened sense of personal risk. Although a higher percentage of white women had greater 5-year Gail risk estimates, there were more black women who perceived their risk as moderate-to-high. It is unclear why more black women than white women perceived higher risk, but it may point to the impact of family history. There were more black women in the ≤ 50 age group and it is possible they felt more vulnerable than older women. Interestingly, not one black woman mentioned older age as a risk factor.
Similar to previous studies (Kristeller et al., 1996
; Rabin & Pinto, 2005
), a high percentage of women in both racial groups believed environmental toxins and stress were associated with breast cancer. The scientific literature does not strongly support a causal role for stress in breast cancer etiology, and there have been mixed results for different environmental toxins. Uncertainty regarding risk factors may be due in part to the evolving nature of cancer research. Conflicting results are often reported in the media, which may lead to confusion about causes. Few women mentioned advancing age and reproductive hormonal factors that are included in the Gail Model; this was especially true among black women and is consistent with other studies on women with a family history of breast cancer that reported a lack of awareness that advancing age, early age at menarche, and late age at menopause were risk factors (Daly, Lerman, Ross, Schwartz, Sands & Masny, 1996
; Rabin & Pinto, 2005
; Ryan & Skinner, 1999
). The fact that age was infrequently mentioned as a risk factor is a concern because age is one of the most important breast cancer risk factors. Most women identified at least one lifestyle behavior as a risk factor for breast cancer, mostly a diet high in fat, even though the evidence for this relationship is inconclusive. Only one third of the women identified lack of routine exercise and 40%, white women only, mentioned overweight/obesity as risk factors despite several studies showing associations with these factors and breast cancer. It is concerning that most women were unaware of the importance of exercise and weight control because 55% of white women and 83% of black women were overweight or obese. Knowledge about the relationship between alcohol consumption and breast cancer was completely lacking despite it being one of the most consistently reported associations in the literature.
Perceived control over breast cancer was generally lacking or minimal which may have to do with the fact that many women related breast cancer with non-modifiable risk factors, such as family history, genetics, and environmental contaminants. With regard to health behaviors, both white and black women had the notion that breast cancer is indiscriminate and occurs in both women who lead and do not lead healthy lifestyles. This view may result in women perceiving limited control even if they actively engage in healthy behaviors. Personal control over lifestyle behaviors influenced healthy behavior change for several women. However, for some there was ambiguity related to risk factor beliefs, personal control and lifestyle practices. For example, one black woman who related lack of exercise with breast cancer felt she had some control, but yet was not engaging in regular physical activity. Real or perceived barriers to lifestyle behavioral changes may play a role.
Use of medical risk-reducing strategies, such as anti-estrogen use or prophylactic mastectomy, had an impact on risk perception and was something women could personally control. However, some women felt they were still at high risk even though these strategies substantially reduce risk. Some women may merely be taking anti-estrogens at the recommendation of their health care provider without understanding the risk reduction associated with their use. Alternatively, disease burden in a family may override knowledge about risk reduction related to these strategies. This points to the need to explore the psychological impact of breast cancer in the family before effective educational strategies can be employed.
Elevated perceived risk was related to healthy lifestyle behavior change for approximately one third of the women. The most common lifestyle behavior changes were dietary. Despite current lack of evidence supporting the relationship between diet and breast cancer, dietary change may be a crucial factor in healthy weight maintenance and this may be important for women concerned about overweight and breast cancer risk. Also, diet is a behavior that women may feel they can control. The dietary changes were consistent with women’s beliefs about dietary fat and breast cancer, especially among black women. Among black participants, 50% made one or more lifestyle behavior change as a result of family history, whereas only 25% of white participants made one or more changes. Overall, 34% reported having made some healthy lifestyle change. This is fairly consistent with findings by Lemon et al. (2004)
who reported that 42% of FDRs, who were primarily white, reported behavior change after diagnosis of breast cancer in a mother, sister, or daughter. Although several women believed that lack of exercise was related to breast cancer, most were not exercising regularly. Some may be unaware of the relationship between physical activity and breast cancer. Two women continued to smoke despite their beliefs that it increases breast cancer risk, but this may be due to the addictive nature of smoking.
This exploratory qualitative study is subject to limitations. The small sample size and sampling method are typical of qualitative research; therefore findings may not be generalized to other women at elevated risk. Also these women were participants of a larger study addressing epidemiological breast cancer risk factors; however their beliefs and health behaviors were not markedly different from those of women with a family history from other studies. Strength of the methodology is that it allowed for in-depth exploration of the topic, which captured nuances of women’s familial experiences that would not be easily obtained through quantitative research.
Findings from this study highlight the importance of understanding perceptions of risk and beliefs about causal attributes of breast cancer among women with a family history. The finding that there was some disconnect between perceived risk and Gail Model risk estimates is noteworthy because behavior changes are likely to result from perceived risk rather than objective risk. Women need to be informed about basic breast cancer risk factors before they can be expected to make risk-reducing lifestyle modifications. Health educators should provide women with an opportunity to discuss their thoughts about and experiences with breast cancer in the family. This information can offer insight into how women develop their perception of risk and provide a basis for educating women about breast cancer risk factors and the benefit of healthy lifestyle practices. Targeted educational interventions that incorporate information about objective risk would be beneficial for FDRs to improve their understanding of personal risk. Educational interventions that address barriers to change may be needed for those women who identify lifestyle behavioral breast cancer risk factors, yet make no changes. Further investigation would improve understanding of other influential factors, such as personal motivation, cost, and time that may be involved in decision-making about healthy lifestyle practices among women with a family history of breast cancer.
In addition to providing insight into the formulation of risk perception, the study identified both similarities and differences among white and black women. Knowledge of racial differences in beliefs, perceptions and lifestyle practices are important for developers of breast cancer education programs. Although information linking some lifestyle risk factors and breast cancer is inconclusive, any intervention based on healthy lifestyle recommendations must be anchored in women’s beliefs about the disease and their perceived ability to control outcomes.