FORCE and researchers at the University of South Florida formed the ABOUT Patient-Powered Network to help advance hereditary cancer research through collaborations. See below for more information about each project, FORCE's role, and the status of the research.
Plan and Prepare
Vanessa Jacoby, MD, University of California, San Francisco
Type of Research:
Cancer Screening and Prevention,Menopause
Studying Long Term Menopause Effects in Women with Inherited Mutations Who Undergo Risk-Reducing Surgery
National guidelines recommend that high risk women with certain inherited mutations remove their ovaries between ages 35 to 40 years. This surgery causes surgical menopause, which can lead to side effects and long-term health issues.
No long-term studies have followed women out after risk-reducing surgery to learn about their health outcomes. This information is needed to help women understand the benefits and risks of surgery and make an informed decision with their doctors. The goal of this proposal is to close these gaps in knowledge.
A small pilot study (called PROSper) by this team followed 100 women with a BRCA mutation for a year after surgery. That study found:
- decreased bone density
- increased menopausal symptoms
- no change in sexual function, quality of life or cardiovascular risk
Goals of the research
This new study will build on these findings. The study will follow more women, including women with other mutations beyond BRCA1 and BRCA2 with a goal of recruiting a more representative and diverse group.
The goals of the study include comparing outcomes in women ages 35-50 with inherited gene mutations linked to ovarian cancer who have risk-reducing ovary removal versus those who keep their ovaries. The researchers will study:
- whether have worse outcomes in the following areas:
- mental health
- sexual function
- quality of life
- menopausal symptoms
- heart disease
- bone loss
Overall the researchers expect this study to:
- improve counseling for women with hereditary ovarian cancer mutations on the full spectrum of surgical risks and benefits.
- improve care for women who choose surgery by increasing knowledge about how to prevent adverse health outcomes and effectively manage bothersome symptoms of premature surgical menopause.
Role of FORCE and ABOUT
FORCE and ABOUT have provided input into the study design and objectives. If the study is funded, we will assist in enrollment of patients.
This research is relevant for:
People who test positive for an inherited mutation
People at high risk for cancer
People with a family history of cancer