Multi-Institutional Evaluation of Women at High-Risk for Developing Breast Cancer

• Published in: Clinical breast cancer Vol. 17; no. 6; pp. 427 - 432
• Main Authors: Hermel, David, Wood, Marie, Chun, Jennifer, Rounds, Tiffany, Sands, Melissa, Schwartz, Shira, Schnabel, Freya Ruth
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.10.2017
• Subjects: Adult; Aged; Aged, 80 and over; Breast Neoplasms - prevention & control; Chemoprevention; Chemoprevention - utilization; Data collaboration; Female; Hematology, Oncology and Palliative Medicine; High-risk registry; Humans; Middle Aged; Obstetrics and Gynecology; Prophylactic Mastectomy - utilization; Registries; Risk assessment; Risk Factors; Risk-reducing strategies; Young Adult; Multi-Institutional; High-Risk Registry; Breast Cancer; Chemoprevention; Risk-reducing strategies; Data collaboration; High-risk registry; Risk assessment
• ISSN: 1526-8209; 1938-0666
• DOI: 10.1016/j.clbc.2017.04.005

Abstract Objectives To better understand the practices and preferences of women at elevated risk of breast cancer by merging registries from two separate institutions and comparing clinical characteristics and outcomes. Methods Women were enrolled in IRB-approved registries between 2003-2015 at the NYU Langone Medical Center and University of Vermont. We compared variables including risk categories, uptake of prevention methods and cancer rates. Results There were 1035 women included in this analysis. We found a 99% concordance of variables collected between the two registries. There were significant differences in age, risk characteristics, uptake of prevention methods and cancer rates between the registries. There was low uptake of chemoprevention (8% for all women), with higher uptake among women with atypia on biopsy (66%) than those with a strong family history or BRCA mutations. Women with BRCA mutations accounted for 76% of those undergoing risk-reducing surgeries. 43 individuals (4% of the entire cohort) developed breast cancer. Of these, 86% were diagnosed with AJCC stage 0 or 1 disease, 95% with tumors under 2 cm, and 70% with poor to moderately differentiated pathology. Only one of the women who developed breast cancer was on chemoprevention and none had prior prophylactic surgery. Conclusions We demonstrate a high degree of concordance between registries suggesting no barriers to multi-institutional collaboration. Overall, there was low uptake of prevention opportunities in this high-risk population. Women developing cancer had predominantly low stage but higher grade disease, which may suggest a benefit to participation in surveillance (or high-risk) programs.