Living with a Hereditary Cancer Syndrome: Personal Perspectives and Implications for Oncology Nurses

To explore the lived experiences of individuals with hereditary cancer syndromes and identify implications for oncology nursing practice.

We invited individuals with hereditary cancer syndromes to contribute first-person narratives describing their experiences. Narratives were thematically analyzed and triangulated with existing literature on patient experiences and the role of oncology nurses in hereditary cancer syndrome care.

Across the narratives, co-authors described the psychological burden of living with uncertainty, marked by anticipatory anxiety surrounding surveillance, symptoms, and potential diagnoses. The analysis allowed us to identify key themes defining the experience of living with hereditary cancer syndromes: psychological and emotional impact, difficulties in communication of genetic risk information, navigating the health care system, patient empowerment and self-management, and the role of nurses.

Findings from this article highlight the lived experiences of individuals with hereditary cancer syndromes, consistent with existing evidence, showing persistent unmet needs that are not adequately addressed within the current health care system.

The narratives highlight several areas where nurses play a critical role in supporting individuals with hereditary cancer syndromes, underscoring the need for comprehensive, personalized, and lifelong care in which nurses tailor interventions to individual syndromes, life stages, and coping styles.