'No Pink Ribbons': How Women's Lived Experiences With Breast Atypia Inform Decisions Involving Risk-Reducing Medications

Abstract

Purpose: Atypical hyperplasia (AH) is associated with a nearly 4-fold elevation of lifetime risk for breast cancer, and lobular carcinoma in situ (LCIS) is associated with a 7- to 8-fold risk. Women with AH/LCIS make numerous decisions in the course of treatment, including whether to take a risk-reducing medication, an option relatively few women pursue. We explored women’s decision-making processes through patient narratives in an effort to inform decision supports for AH/LCIS. Methods: We conducted in-depth interviews with 20 English-speaking women with AH/LCIS and no subsequent diagnosis of invasive breast cancer who had enrolled in the Rays of Hope Center for Breast Cancer Research patient registry between April 5, 2012, and March 31, 2016. Interviews were audiotaped, professionally transcribed, and qualitatively analyzed using thematic qualitative content analysis. Results: We identified three major narrative themes: 1) experiences with medical care; 2) decision-making; and 3) making sense of AH/LCIS. Each major theme had several subthemes, many of which map onto existing decisional theories and heuristics. Subthemes included the impact of life context on diagnosis meaning, emotional responses, changes in self-concept and body image, and understanding of the risk-benefit of risk-reducing medications. Conclusions: This narrative analysis offers important insights into how lived experience may influence decision-making for women with AH/LCIS. Decision supports that focus not only on analytic decisional processes, but also patients’ subjectivities and decisional heuristics, could prove useful for women and their health care providers.

Keywords

• atypical hyperplasia
• breast
• breast cancer prevention
• shared decision-making
• patient narrative
• qualitative