PATIENT REGRETS AFTER BILATERAL PROPHYLACTIC MASTECTOMY

Background: The discovery of a cadre of breast cancer susceptibility g enes has resulted in an increase in the number of women seeking inform ation about prophylactic breast surgery, but virtually no large-scale prospective databases exist to assist women considering prophylactic m astectomy. Methods: The authors constructed a National Prophylactic Ma stectomy Registry comprised of a volunteer population of 817 women fro m 43 states who have undergone prophylactic mastectomy. Results: In th e registry, 370 women had undergone bilateral prophylactic mastectomy. Twenty-one (5%) women expressed regrets about the procedure. The medi an follow-up was 14.6 years (mean 14.8 years; range 0.2-51 years). Tho se with regrets were subsetted into those with major (n = 10) or minor (n = 7) regrets. Regrets were more common in those women with whom di scussion about prophylactic mastectomy was initiated by a physician (1 9/255), compared with patients who initiated the discussion themselves (2/108; P < .05). Conclusions: The overall satisfaction rate of 95% r eported here may be explained by the voluntary nature of this registry . The most important factor that predicts an unfavorable outcome follo wing bilateral prophylactic mastectomy is a physician-initiated discus sion.