The Voices of Young Women with Breast Cancer: Providing Support and Information for Improved Fertility Preservation Discussions

Purpose: Fertility is a concern for young women with breast cancer. We explore patient experiences with fertility discussions at diagnosis to identify barriers and preferences to patient-centered delivery of care. Methods: A qualitative study was conducted on consecutive, female breast cancer survivors, 39 years of age or younger at diagnosis and within 2 years of diagnosis, who attended routine outpatient follow-up at a large academic teaching center. Interviews lasted 30 minutes and were transcribed verbatim. Thematic analysis was conducted to explore experiences around fertility discussions. Strength of the theme was determined by examining the frequency of a response. Data collection and analysis continued until theoretical saturation was reached. Results: Analysis comprised 50 women with a median age of 34.5 years (range 25-39 years). Thirty-nine women (78%) had completed university education. Thirty-three women (66%) recalled having fertility preservation discussions at diagnosis. The most common themes identified include the following: (i) the requirement for more patient support, (ii) improving information, (iii) integration of patient values, (iv) creating options for patients, (v) financial limitations, and (vi) the need to look beyond the immediate impact. Conclusions: In this contemporary cohort of young adult breast cancer survivors, fertility discussion experiences at diagnosis remain suboptimal. Improved information and a focus on individual patient desires can improve experiences.