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Soc Sci Med. 2016 Aug;163:21-7. doi: 10.1016/j.socscimed.2016.06.039. Epub 2016 Jun 23.

"It's not if I get cancer, it's when I get cancer": BRCA-positive patients' (un)certain health experiences regarding hereditary breast and ovarian cancer risk.

Author information

1
Department of Communication, University of South Florida, 4202 E. Fowler CIS 3057, Tampa, FL 33620, USA. Electronic address: marleahdeank@usf.edu.

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.

KEYWORDS:

BRCA; Communication; Genetic risk; Hereditary breast and ovarian cancer

PMID:
27376595
DOI:
10.1016/j.socscimed.2016.06.039
[Indexed for MEDLINE]

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