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

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Abstract

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.

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