Purpose/objectives: To explore how women with a hereditary risk of breast cancer experience living with and managing that risk through surveillance.
Research approach: Hermeneutic phenomenology guided the qualitative research design.
Setting: The Facing Our Risk of Cancer Empowered online organization.
Participants: 9 women undergoing breast surveillance for hereditary breast cancer risk recruited through purposive sampling.
Methodologic approach: Data were collected through semistructured interviews lasting about an hour. A team approach guided data analysis of transcribed interview text based on a modified Diekelman, Allen, and Tanner method.
Main research variables: Lived experience and personal meaning of hereditary breast cancer risk and surveillance.
Findings: Hereditary risk of breast cancer involves a change in one's view of life and necessitates engaging in medical vigilance, often making these women feel ill when they are otherwise healthy. Most have personal family experiences of cancer and value surveillance, although they live with the "what if" of a cancer diagnosis when waiting for surveillance results. All women discussed a need for accurate information, support, and guidance from healthcare providers.
Conclusions: Women became their own experts at living with and managing hereditary breast cancer risk. Experiences and interactions within the healthcare system influenced the meaning of breast surveillance.
Interpretation: Nurses should be aware of the high level of knowledge among women living with hereditary risk and respect their knowledge by providing accurate and informed care. That can occur only through proper education of nurses and all healthcare professionals working with women at risk for hereditary breast cancer so that they understand current standards of care and how hereditary breast cancer risk is defined and managed.