Multi-institutional Evaluation of Women at High Risk of Developing Breast Cancer

We performed the present study to better understand the practices and preferences of women with an elevated risk of breast cancer by merging the registries from 2 separate institutions and comparing the clinical characteristics and outcomes.

The data from women enrolled in institutional review board-approved registries from 2003 to 2015 at the New York University Langone Medical Center and University of Vermont Medical Center were evaluated. We compared patient characteristics, risk factors, uptake of prevention methods, and cancer rates between the 2 registries.

A total of 1035 women were included in the present analysis. We found a 99% concordance of variables collected between the 2 registries. Significant differences were found in age, risk characteristics, uptake of prevention methods, and cancer rates between the 2 registries. The uptake of chemoprevention was low (8% for all women), with greater uptake among women with atypia found on biopsy examination (66%) than among those with a strong family history or BRCA mutations. Women with BRCA mutations accounted for 76% of those undergoing risk-reducing surgery. Of the 1035 women, 43 (4%) developed breast cancer. Of these, 86% were diagnosed with American Joint Committee on Cancer stage 0 or 1 disease, 95% with tumors < 2 cm, and 70% with poor to moderately differentiated pathologic features. Only 1 of the women who developed breast cancer had been undergoing chemoprevention, and none had undergone previous prophylactic surgery.

We found a high degree of concordance between registries, suggesting no barriers exist to multi-institutional collaboration. Overall, a low uptake of prevention opportunities was found in this high-risk population. Women developing breast cancer had predominantly low-stage but higher grade disease, which might suggest a benefit to participation in surveillance (or high-risk) programs.