Journal: Journal of cancer survivorship : research and practice
This qualitative study explored how women diagnosed with breast cancer before age 50 experience primary care during long-term survivorship.
Design and population:
- Semi-structured interviews with 16 early-onset breast cancer survivors
- Mean age at interview: 58.4 years
- Mean time since diagnosis: 17 years (mean age at diagnosis 41.4 years)
- Relationships with current primary care clinicians: relatively brief (mean 5.8 years; median 1.5 years)
Key findings:
- Survivorship care was highly fragmented:
- Many participants had limited or no ongoing connection with their original oncology team.
- Several were either disconnected from oncology entirely (n=6) or followed by an oncology specialist who was not part of their initial treating team (n=7).
- Late and long-term treatment effects were common:
- Cardiovascular issues (n=10)
- Premature menopause (n=10)
- Pain (n=7)
- Despite this morbidity burden, survivors seldom relied on primary care for cancer-related survivorship issues.
- Fragmentation and lack of coordinated care were often accepted as “normal”; survivors felt they had to self-advocate and personally coordinate long-term health management.
Conclusions and implications:
- Early-onset breast cancer survivors spend decades in a system where clinical continuity across oncology and primary care is limited.
- Survivors shoulder much of the responsibility for integrating their cancer history with current health concerns.
- The authors highlight a need for dynamic, patient-centered information tools to:
- Help survivors communicate their cancer history in primary care settings.
- Link current symptoms to prior cancer treatment.
- Such resources could bridge longstanding gaps between oncology and primary care during extended survivorship.