Purpose: The purpose of this research was to describe the challenges young adult childhood cancer survivors (ACCS) experience of living with an unknown fertility status.
Methods: In this qualitative study, we analyzed data from in-depth interviews with 25 ACCS (15 females, 10 males) using content-driven inductive thematic analysis and constant comparative techniques.
Results: Three themes provide insight into ACCS' experiences of living with an uncertain fertility status. (1) The marked psychological burden, which included fear, worry, anxiety, and sadness, was ubiquitous. (2) Romantic relationships were negatively affected and entailed fear of disappointing one's partner, the difficulty of discussing fertility issues, and shying away from romantic relationships. (3) Communication challenges with healthcare providers were apparent across the cancer trajectory, made worse by provider knowledge gaps and dismissal of fertility concerns. (4) Well-known gender stereotypes about pregnancy and childrearing were replicated, while the emotional and life impacts that uncertain fertility could exert on males were minimized.
Conclusion: This study provides beginning insights into the experiences of young ACCS as they navigate an unknown fertility status and highlights existing gaps in fertility-related healthcare services.
Implications for cancer survivors: Uncertain fertility has implications for survivors' wellbeing that remain poorly addressed by the existing structure of cancer survivor and fertility services. Assessing and addressing the fertility-related needs of ACCS will continue to be a vital component of patient-centered care in the future, and research to develop comprehensive support, resources, and processes of care are vital to meet this priority need.
Keywords: Cancer survivorship; Childhood cancer; Fertility; Infertility; Late effects; Oncology; Qualitative.