‘Thatʹs like chopping off a finger because you’re afraid it might get broken’: Disease and illness in womenʹs views of prophylactic mastectomy

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 womenʹs interest in undergoing the procedure. We report on womenʹs responses to this surgical option as a prevention tool. Data derive from a multi-method study of womenʹs 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 womenʹs 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.