Keywords

BRCA negative, Breast cancer genetics, Hereditary, Lived experience, Unaffected

 

Authors

  1. Schroeder, Dawn RN, PhD
  2. Duggleby, Wendy RN, PhD, AOCN
  3. Cameron, Brenda L. RN, PhD

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.