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Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.

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Looking for Answers to Your HBOC Questions? Participate in Our Surveys

by Lisa Rezende, PhD

Individuals facing hereditary breast and ovarian cancer (HBOC) work with their doctors to make decisions on managing risk and treating disease. Some of the decisions can be based on decades of research and carefully crafted clinical guidelines. But in some cases, there is not enough research to guide decisions that people with HBOC face every day. FORCE and the ABOUT Network are conducting a series of anonymous surveys to find out how you make medical decisions about HBOC treatment, prevention, detection and quality of life.

Our first survey looked at how women decide whether or not to remove their uterus at the time of risk-reducing surgery to remove ovaries and fallopian tubes. No national guidelines recommend for or against hysterectomy for women with BRCA mutations, yet women frequently turn to FORCE for information and support to help them sort through this dilemma and make the decision that is right for them.

The survey has provided us with insights into how high-risk women make decisions about hysterectomy. We learned that:

  • about half of women had their uterus removed at the time of risk-reducing surgery.
  • a doctor's recommendation is the most frequent factor that influences women's decision to remove or not to remove their uterus.
  • concerns about uterine cancer risk and prior uterine abnormalities such as fibroids influenced women's decisions to remove their uterus.
  • concerns about possible side effects and surgical complications influenced women's decisions to keep their uterus.
  • many women who are considering surgery expressed uncertainty about whether or not to remove their uterus.

Our hysterectomy survey and a follow-up survey on decision making regarding hormone replacement therapy are currently open. The results of these surveys will help us to develop research studies to learn which medical decisions provide the best outcomes, and to develop education programs to address gaps in knowledge.

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Wherever you are in the process of determining your cancer risk or risk management options, there is a good chance that other people are going through the same thing and are available to offer support.

Understanding HBOC and BRCA

The Understanding HBOC & BRCA section of this website has a comprehensive collection of information on a variety of topics, and includes links to further in-depth articles, books and websites.

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