Purpose: The purpose of this study was to assess women's knowledge about tamoxifen, to examine the frequency of tamoxifen usage and other preventive measures in BRCA1/2 mutation carriers, and to document women's concerns about taking tamoxifen for chemoprevention.
Methods: One hundred and twenty five women with known BRCA1 or BRCA2 mutation and with no prior diagnosis of breast or ovarian cancer were identified through the records of two large cancer genetics clinics. These women had been counseled about their cancer risk and various preventive options were discussed. At a time from two to 110 months following disclosure session, a questionnaire was sent by mail. Women were asked about their current and past use of tamoxifen, their knowledge of risks and benefits, their desire for additional information, and their experience with other preventive measures.
Results: Eighty-one of 125 eligible women returned the questionnaire (64.8%). Ten women (12.3%) had used tamoxifen and eight women had used raloxifene (9.9%). Twenty-two women (27.2%) had undergone prophylactic mastectomy and 54 women (66.7%) had had an oophorectomy. Twelve women (14.8%) did not recall discussing tamoxifen. Thirty-five women (58.3%) said that their doctors had not provided them with sufficient information about tamoxifen to consider its use. Fear of side-effects was the most common reason for not taking tamoxifen.
Conclusion: Although tamoxifen appears to be effective in preventing breast cancer in women with a BRCA1 or BRCA2 mutation, few women now take the drug compared to those who choose other preventive measures including surgery. Health care providers should provide accurate information about the risks and benefits of tamoxifen to allow women to make informed decisions.