Moving In and Out of the What-Ifs: The Experiences of Unaffected Women Living in Families Where a Breast Cancer 1 or 2 Genetic Mutation Was Not Found.

BACKGROUND

In families where genetic testing for the breast cancer 1 and 2 genes (BRCA1/2) has not identified a deleterious mutation, the risk for hereditary breast cancer (HBC) can still be high when there is a strong family history. Little is known about how an awareness of risk for HBC impacts the everyday lives of unaffected women (no personal history for breast and/or ovarian cancer) in these families.

OBJECTIVE

The aim of this study is to explore how unaffected women, living in BRCA1/2-negative families, experience living with risk for HBC.

METHODS

van Manen's hermeneutic phenomenological approach guided this study. Unaffected at-risk women were recruited from a hereditary breast and ovarian cancer clinic in Western Canada.

RESULTS

Nine women participated in 20 open-ended conversations. Phenomenological reflection on the 4 life existentials (lived space, body, time, and relations) revealed "Moving In and Out of the What-Ifs" as an overarching description that was communicated through the following themes: "Just Moving Along: Living a Normal Life," "Moving Into Those Dark Spaces," "Is there Something Wrong With Me"? "Markings in Time," "Living in the Moment," "Being Cared For," and "Keeping Me Grounded."

CONCLUSIONS

The findings reveal how knowledge from predictive medicine impacts the lives of women and the importance of supportive relations and provides a foundation for future research into how health is perceived.

IMPLICATIONS FOR PRACTICE

The findings inform the practices of healthcare professionals as they engage in discussions with women living with risk for HBC and highlight the importance of a supportive relationship.