title: '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.
abstract: 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.
authors.affiliation: Schools of Nursing & Medicine, Oregon Health & Science University, 3455 SW US Veterans Hospital Road, SN-5S, Portland, OR 97239-2941, USA. pressn@ohsu.edu
authors.forename: Nancy
authors.initials: N
authors.lastname: Press
authors.forename: Susan
authors.initials: S
authors.lastname: Reynolds
authors.forename: Linda
authors.initials: L
authors.lastname: Pinsky
authors.forename: Vinaya
authors.initials: V
authors.lastname: Murthy
authors.forename: Michael
authors.initials: M
authors.lastname: Leo
authors.forename: Wylie
authors.initials: W
authors.lastname: Burke
mesh_terms: D001943:Breast Neoplasms / Q000235:genetics / Q000517:prevention & control* / Q000523:psychology*; D003657:Decision Making; D005260:Female; D020022:Genetic Predisposition to Disease; D006801:Humans; D008408:Mastectomy / Q000523:psychology*; D012959:Socioeconomic Factors