Decision-making Regarding Prophylactic Mastectomy and Oophorectomy in Women Seeking Genetic Counseling and Testing for BRCA1/2 Mutations
For women with a strong family history of breast/ovarian cancer, few options exist for
primary prevention of these cancers other than prophylactic surgery, or surgical removal of
noncancerous organs in order to prevent occurrence of the disease. The primary aim of the
study is to describe the stages of intention to undergo prophylactic mastectomy and/or
oophorectomy among women seeking genetic testing for inherited BRCA1 and BRCA2 mutations,
and to identify factors that influence stages of intention regarding prophylactic surgery.
To achieve these aims, 626 women undergoing genetic counseling and testing for inherited
breast ovarian cancer risk will be assessed before their first genetic counseling session
and three times (1 week, 6 months and 12 months) in the year following notification of their
genetic test results.
Observational Model: Cohort, Time Perspective: Prospective
Primary outcome of the study is stage of intention to undergo prophylactic surgery. Outcome variable consists of 6 rank-ordered, qualitatively distinct stages (see Measures) ranging from Precontemplation (no intention) to Action (intention carried out).
Wendy Lichtenthal, Ph.D.
Memorial Sloan-Kettering Cancer Center
United States: Institutional Review Board
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