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.

Inclusion Criteria:

- Female gender

- age 25 and above

- a personal or family history of breast and/or ovarian cancer showing clinical features
associated with increased risk of carrying a BRCA1/2 mutation (e.g., breast and
ovarian cancer on the same side of the family, early age of onset, multiple primaries
in the same individual) or having a first-degree relative with a known BRCA1 or BRCA2
mutation.

Exclusion Criteria:

- Male gender

- age less than 25 years

- unable to provide meaningful informed consent due to physical, cognitive or
psychiatric disability

- non-English speaking