How Should We Inform Women at Higher Risk of Breast Cancer About Tamoxifen? An Approach with a Decision Guide

Summary Background . Tamoxifen has been shown to reduce the incidence of invasive breast cancer in women at higher risk. Translating these research results to clinical practice is challenging. Our objective was to develop and evaluate a decision-making guide and process that can be used in clinical practice to inform eligible women of chemoprevention with tamoxifen. Methods . A decision guide explaining the benefits and risks of tamoxifen was developed with input from health care professionals and two focus groups of women both with and without cancer. Following consent, 51 eligible women presenting to a multi-disciplinary diagnostic facility for breast problems were given the decision guide/questionnaire to read, fill out and return by mail. Women with further questions or wanting to take tamoxifen were encouraged to re-contact their physicians. Results . Atypia was seen in 60% of subjects. Median 5-year Gail risk was 3.7 (range 1.7–9.4). Only 6 (11.8% 95% CI = 2.9, 20.6%) women reported they would like to take tamoxifen while 6 (11.8% 95% CI = 2.9, 20.6%) remained uncertain. Conclusion . We have developed a decision-making guide and process that is acceptable to providers and women to identify and inform women at higher risk of breast cancer with regard to chemoprevention with tamoxifen. Few women in this select group, when provided with a balanced decision guide, wished to pursue chemoprevention with tamoxifesn