Press, N. et al. 'That's like chopping off a finger because you're afraid it might get broken': disease and illness in women's views of prophylactic mastectomy. Soc. Sci. Med. 61, 1106-1117

Schools of Nursing & Medicine, Oregon Health & Science University, 3455 SW US Veterans Hospital Road, SN-5S, Portland, OR 97239-2941, USA.
Social Science & Medicine (Impact Factor: 2.89). 10/2005; 61(5):1106-17. DOI: 10.1016/j.socscimed.2005.01.012
Source: PubMed


While data are accumulating on the efficacy of prophylactic mastectomy as a means to reduce breast cancer risk in high risk women, the effectiveness of the procedure depends on women's interest in undergoing the procedure. We report on women's responses to this surgical option as a prevention tool. Data derive from a multi-method study of women's interest in and understandings about genetic testing for breast cancer susceptibility. The sample comprises 246 women of varying ethnicities and familial breast cancer risk from Seattle, USA. In this paper, quantitative data are presented on the sociodemographic and risk perception correlates of degree of interest in taking a genetic test for breast cancer if prophylactic mastectomy were the only treatment option. In addition, we report results of a content analysis of women's open-ended responses to the question of whether and why they could imagine undergoing prophylactic mastectomy. Our analysis of these data benefits from a central distinction in medical anthropology between the concepts of illness and disease. We suggest that while prophylactic mastectomy may prevent the "disease" of breast cancer, it may be of little interest to women who see this surgery as itself mimicking the "illness" of breast cancer.

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    • ""Putting risk in its place" did not occur for all women, and was not a static process, indicating that some women are more able to live with the perception of chronic breast cancer risk than others. Press et al [21] argued that RM may have different meanings for women, and they explained the variation in women's uptake of RM in the United States, in terms of the distinction between illness and disease. Women who see RM as mimicking the illness of breast cancer, as opposed to preventing the disease, are less likely to consider the procedure an option. "
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    ABSTRACT: The purpose of this research was to explore women's decision-making experiences related to the option of risk-reducing mastectomy (RM), using a case series of three women who are carriers of a BRCA1/2 gene mutation. Data was collected in a pilot study that assessed the response of women to an information booklet about RM and decision-making support strategies. A detailed analysis of three women's descriptions of their decision-making processes and outcomes was conducted. All three women were carriers of a BRCA1/2 gene mutation and, although undecided, were leaning towards RM when initially assessed. Each woman reported a different RM decision outcome at last follow-up. Case #1 decided not to have RM, stating that RM was "too radical" and early detection methods were an effective strategy for dealing with breast cancer risk. Case #2 remained undecided about RM and, over time, she became less prepared to make a decision because she felt she did not have sufficient information about surgical effects. Case #3 had undergone RM by the time of her second follow-up interview and reported that she felt "a load off (her) mind now". RM decision making may shift over time and require decision support over an extended period.
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    ABSTRACT: Genetic research is rapidly increasing the opportunities for the detection of inherited cancer risk. Clinicians and policy makers must ensure the adequate evaluation of the benefits and harms of this new area of practice, address the challenges of family-based detection of individuals at risk and develop practice guidelines and educational strategies that are responsive to rapidly changing knowledge. When the benefits of testing are well established, efforts must also be made to ensure access to genetic services for all who can benefit.
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