Background: The discovery of a cadre of breast cancer susceptibility genes has resulted in an increase in the number of women seeking information about prophylactic breast surgery, but virtually no large-scale prospective databases exist to assist women considering prophylactic mastectomy.
Methods: The authors constructed a National Prophylactic Mastectomy Registry comprised of a volunteer population of 817 women from 43 states who have undergone prophylactic mastectomy.
Results: In the registry, 370 women had undergone bilateral prophylactic mastectomy. Twenty-one (5%) women expressed regrets about the procedure. The median follow-up was 14.6 years (mean 14.8 years; range 0.2–51 years). Those with regrets were subsetted into those with major (n=10) or minor (n=7) regrets. Regrets were more common in those women with whom discussion about prophylactic mastectomy was initiated by a physician (19/255), compared with patients who initiated the discussion themselves (2/108;P<.05).
Conclusions: The overall satisfaction rate of 95% reported here may be explained by the voluntary nature of this registry. The most important factor that predicts an unfavorable outcome following bilateral prophylactic mastectomy is a physician-initiated discussion.
Easton DF, Ford D, Bishop DT, Breast Cancer Linkage Consortium. Breast and ovarian cancer incidence in BRCA1-mutation carriers.Am J Hum Genet 1995;56:265–71.PubMedGoogle Scholar
Ford D, Easton DF, Peto J. Estimates of the gene frequency of BRCA1 and its contribution to breast and ovarian cancer incidence.Am J Hum Genet 1995;57:1457–62.PubMedGoogle Scholar
Ford D, Easton DF, Bishop DT, Narod SA, Goldgar DE. Risk of cancer in BRCA-1 mutation carriers.Lancet 1994;343:692–5.CrossRefPubMedGoogle Scholar
Struewing JP, Hartge P, Wacholder S. The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews.N Engl J Med 1997;336:1401–8.CrossRefPubMedGoogle Scholar
Whittemore AS, Gong G, Itnyre J. Prevalence and contribution of BRCA1 mutations in breast cancer and ovarian cancer: results from three US population based case control studies of ovarian cancer.Am J Hum Genet 1997;60:496–504.PubMedGoogle Scholar
Greenwald P, Nasca PC, Lawrence CE. Estimated effect of breast self examination and routine physician examinations on breast cancer mortality.N Engl J Med 1978;299:271–3.PubMedGoogle Scholar
Kerlikowske K, Grady D, Rubin SM, Sandrock C, Ernster VL. Efficacy of screening mammography: a meta-analysis.JAMA 1995;273:149–54.CrossRefPubMedGoogle Scholar
Lerman C, Narod SA, Schulman K. BRCA1 testing in families with hereditary breast-ovarian cancer: a prospective study of patient decision making and outcomes.JAMA 1996;275:1885–92.CrossRefPubMedGoogle Scholar
Hoskins KF, Stopfer JE, Calzone KA. Assessment and counseling for women with a family history of breast cancer: a guide for clinicians.JAMA 1995;273:577–85.CrossRefPubMedGoogle Scholar
Gross TP, Schlesselman JJ. The estimated effect of oral contraceptive use on the cumulative risk of ephithelial ovarian cancer. Obstet Gynecol 1994;83:419–24.PubMedGoogle Scholar
Kosary CL, Ries LAG, Miller BA, Hankey BF, Harras A, Edwards BK, eds.SEER Cancer Statistics Review, 1973–1992: Tables and Graphs. Bethesda, MD: National Cancer Institute; 1995 (NIH publication no. 96-2789).Google Scholar