Date of Award

6-30-2016

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Peggy Walker

Abstract

When a woman is at an increased risk of developing breast cancer due to a pathogenic mutation or a significant family history of the disease, she will be faced with choosing from among multiple management options, including risk-reducing mastectomy (RRM). The relative rate of RRM for both diagnosed and unaffected high-risk women has increased in recent years. Previous research has investigated the factors that influence women diagnosed with the disease to undergo RRM, but has not fully addressed how unaffected women make their decisions to choose RRM as an option when they are still healthy. This study was designed to specifically focus on decision-making factors of unaffected women at high risk for breast cancer due to a known pathogenic mutation or family history, and who had completed prophylactic RRM. Women participated in a mixed-mode survey that was guided by review of published literature. Factors such as perceived risk; anxiety about personal cancer risk; family implications; “closeness” to cancer; information from healthcare providers; and body image were studied for possible influence on the participants’ decision-making process. Twenty-five women participated by completing demographic information; answering multiple Likert scale questions; and reporting genetic mutation results and visits with various healthcare specialists. They answered four open-ended questions to extrapolate on influencing factors and the reasons they made their RRM decisions. Results showed that personal health and family implications were two of the most important influencers, and that association between concern for their sexuality and body image was significant. All 25 participants reported satisfaction with their decisions, and level of education or age of children were not significant. This study allows the voices of women to speak to genetic counselors and other healthcare specialists about the various important factors that influence healthy high-risk women to make life-changing decisions for themselves and their family members.

Rights

© 2016, Stephanie N. Galloway

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