DESCRIPTION (provided by applicant): 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
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