Women at increased risk for breast cancer face a difficult decision about the role of prophylactic mastectomy in their effort to prevent breast cancer. While evidence suggests a substantial reduction in breast cancer risk occurs after prophylactic mastectomy, its effect on other patient-oriented outcomes is unclear. This is particularly true for women undergoing prophylactic mastectomy after breast cancer occurred in the contralateral breast. The proposed study will address this deficiency by gathering information on patient-oriented outcomes from women identified for an ongoing study of the efficacy of prophylactic mastectomy in six HMO community-based populations across the United States. The study includes 321 women with bilateral prophylactic mastectomy done for a family history of breast cancer or a personal history of benign breast disease and 1,161 women with breast cancer who underwent unilateral prophylactic mastectomy of the contralateral breast. Using focus groups and a mailed survey, the study will investigate five outcomes important to women considering prophylactic mastectomy: willingness to recommend prophylactic mastectomy to similar women; breast cancer risk-related stress; body image; sexual activity and satisfaction; and health perception, Important covariates that will be considered in the analyses include time since and complications after prophylactic mastectomy and demographic characteristics such as age and education. Results of the survey will be compared to those in similar women who have not undergone prophylactic mastectomy but who are at increased risk for breast cancer due to family or personal history of breast cancer or personal history of benign breast disease. This study will provide critical information for women and their health care providers considering prophylactic mastectomy, a decision currently based on a dearth of information on long-term patient-oriented outcomes.
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