“It's not if I get cancer, it's when I get cancer”: Previvors' (Un)Certain health experiences regarding hereditary breast and ovarian cancer risk

abstract:
“It's not if I get cancer, it's when I get cancer”: Previvors' (Un)Certain health experiences regarding hereditary breast and ovarian cancer risk 
 June 23, 2016

Highlights

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A BReast CAncer (BRCA) genetic mutation increases a patient's cancer risk.

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Interviews were conducted with patients to understand their health experiences.

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BRCA-positive patients experience sources of medical and familial uncertainty.

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BRCA-positive patients experience (un)certainty as an ongoing process.

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This research extends conceptual understandings of uncertainty in health.

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Abstract

Rationale

Women with a harmful mutation in the BReast CAncer (BRCA) gene are at significantly increased risk of developing hereditary breast and ovarian cancer (HBOC) during their lifetime, compared to those without. Such patients—with a genetic predisposition to develop cancer but who have not yet been diagnosed with cancer—live in a constant state of uncertainty and wonder not if they might get cancer but when.

Objective

Framed by uncertainty management theory, the purpose of this study was to explore BRCA-positive patients' health experiences after testing positive for the BRCA genetic mutation, specifically identifying their sources of uncertainty.

Methods

Thirty-four, qualitative interviews were conducted with female patients. Participants responded to online research postings on the non-profit organization Facing Our Risk of Cancer Empowered's (FORCE) message board and social media pages as well as HBOC-specific Facebook groups. The interview data were coded using the constant comparison method.

Results

Two major themes representing BRCA-positive patients' sources of uncertainty regarding their genetic predisposition and health experiences emerged from the data. Medical uncertainty included the following three subthemes: the unknown future, medical appointments, and personal cancer scares. Familial uncertainty encompassed the subthemes traumatic family cancer memories and motherhood.

Conclusions

Overall, the study supports and extends existing research on uncertainty—revealing uncertainty is inherent in BRCA-positive patients' health experiences—and offers new insight regarding uncertainty management and HBOC risk.

(Note) This manuscript is a part of research I conducted for my dissertation at Texas A&M University. My dissertation advisor, listed on the IRB Approval Letter, was Dr. Richard L. Street Jr.