Background: Rates of contralateral prophylactic mastectomy (CPM) have increased dramatically, particularly among younger women with breast cancer, but little is known about how women approach the decision to have CPM.
Objective: To examine preferences, knowledge, decision making, and experiences of young women with breast cancer who choose CPM.
Design: Cross-sectional survey.
Setting: 8 academic and community medical centers that enrolled 550 women diagnosed with breast cancer at age 40 years or younger between November 2006 and November 2010.
Patients: 123 women without known bilateral breast cancer who reported having bilateral mastectomy.
Measurements: A 1-time, 23-item survey that included items related to decision making, knowledge, risk perception, and breast cancer worry.
Results: Most women indicated that desires to decrease their risk for contralateral breast cancer (98%) and improve survival (94%) were extremely or very important factors in their decision to have CPM. However, only 18% indicated that women with breast cancer who undergo CPM live longer than those who do not. BRCA1 or BRCA2 mutation carriers more accurately perceived their risk for contralateral breast cancer, whereas women without a known mutation substantially overestimated this risk.
Limitations: The survey, which was administered a median of 2 years after surgery, was not validated, and some questions might have been misinterpreted by respondents or subject to recall bias. Generalizability of the findings might be limited.
Conclusion: Despite knowing that CPM does not clearly improve survival, women who have the procedure do so, in part, to extend their lives. Many women overestimate their actual risk for cancer in the unaffected breast. Interventions aimed at improving risk communication in an effort to promote evidence-based decision making are warranted.
Primary Funding Source: Susan G. Komen for the Cure.