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