“I had to work it out for myself”: opportunities for primary care to fill a void for early-onset breast cancer survivors

Purpose Breast cancer incidence in women under 50 (early-onset) is steadily increasing. Primary care clinicians can play a role in managing late and long-term treatment effects for these women, who face decades of survivorship and are coping with a life-stage discordant illness. This study describes early-onset breast cancer survivors’ experiences with primary care. Methods Semi-structured interviews were conducted with early-onset breast cancer survivors ( N = 16). Iterative, inductive thematic analysis was used to identify patterns in experiences with primary care. Results Participants were on average 58.4 years old and 17 years post-diagnosis ( M age at dx = 41.4). Relationships with current primary care clinicians were generally short (mean = 5.8 years; median = 1.5 years). Many survivors lacked continuity, being either disconnected from oncology ( N = 6) or seeing an oncology specialist not on their initial treating team ( N = 7). Despite high rates of late/long-term treatment effects, including cardiovascular issues ( N = 10), premature menopause ( N = 10), and pain ( N = 7), participants rarely turned to primary care clinicians for support. This fragmentation was often normalized by survivors, who felt they had to self-advocate for their own long-term health management. Conclusions Early-onset breast cancer survivors navigate survivorship in a fragmented healthcare system and bear the burden of coordinating their own care. Dynamic information support tools are needed to empower survivors to communicate their cancer history and connect symptoms to cancer-related issues in primary care settings. Implications for Cancer Survivors As clinical continuity is limited over decades of survivorship, early-onset cancer survivors need resources that bridge the gap between their cancer history and current primary care management. Trial registration Registered with ClinicalTrials.gov on June 2, 2022: NCT05400941, https://clinicaltrials.gov/study/NCT05400941