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Decision Making Regarding Prophylactic Mastectomy and Oophorectomy in Women Seeking Genetic Testing for Inherited BRCA1 and BRCA2 Mutations

[Protocol 03-001]


Full Title :
DECISION-MAKING REGARDING PROPHYLACTIC MASTECTOMY AND OOPHORECTOMY IN WOMEN SEEKING GENETIC COUNSELING AND TESTING FOR BRCA1 AND BRCA2 MUTATIONS
Purpose :

The purpose of this study is to learn more about women's decision to undergo risk-reducing ("prophylactic") surgery -- the removal of healthy organs in order to reduce risk of cancer. Some women at high risk for breast cancer choose to have their breasts or ovaries removed before the disease develops, while some women at high risk for ovarian cancer may have their ovaries removed. This study will help to clarify what makes women decide whether or not to have this kind of surgery.

Women make these decisions after genetic counseling and possibly testing for mutations that may put them at risk for these cancers. Participants in this study will undergo four short (20-minute) telephone interviews over the course of a year -- one before the first genetic counseling session, and the other three at specified intervals after they receive their genetic testing results (should they opt for testing).

Interview questions will focus on their thoughts and feelings about being at risk for breast and ovarian cancer, and whether they intend to have risk-reducing surgery. All communications will be kept confidential, using identification numbers only.

Eligibility :

To be eligible for this study, patients must meet several criteria, including but not limited to the following:

  • Participants must be women age 25 and older who have a personal or family history of breast and/or ovarian cancer showing clinical features associated with an increased risk of carrying a mutation in the BRCA1 or BRCA2 genes (for example, breast and ovarian cancer on the same side of the family, early age of onset, or multiple primary cancers in the same individual), or having a first-degree relative with a known BRCA1 or BRCA2 mutation.
  • Participants should be seeking genetic counseling and testing regarding their risk for breast/ovarian cancer.
  • Patients must speak English.

For more information and to see if you are eligible for this study, please contact Karen Hurley, Ph.D., at 646-888-0038. Individuals interested in scheduling a genetic counseling appointment should call Clinical Genetics directly at 646-888-4050.

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