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Risk Management for People with Inherited Mutations

The National Comprehensive Cancer Network (NCCN) provides risk management guidelines for people with mutations. We recommend that you speak with a genetics expert who can look at your personal and family history of cancer and can help you decide on a plan to manage your risk. You can learn more about risk management options in our section on Screening and Risk Reduction by Cancer Type. Note that when we use "men" and "women" we are referring to the sex you were assigned at birth.

Ovarian and cancer risk management

Risk reducing surgery:

  • Risk-reducing removal of ovaries and () is recommended between age of 45 to 50 (or younger if there is a family history of an earlier ovarian cancer.
    • After , a very small risk remains (about 1-2 percent) for a related cancer known as primary peritoneal cancer (PPC). Given how rare this cancer is, experts do not recommend screening for PPC after .
  • Removal of the only () is being studied as an option for lowering risk in people who are not ready to remove their ovaries. Studies on the benefit of have not been completed, and at this time, it is not known if lowers the risk for ovarian cancer in high-risk people. 
    • Consider enrolling in a research study looking at this procedure to lower cancer risk.

Medications to lower risk

  • Oral contraceptives (birth control pills) have been shown to lower the risk for ovarian cancer. You should have a discussion with your doctor about the benefits and risks of oral contraceptives for lowering ovarian cancer risk. 

Screening:

  • Symptom awareness: Become aware of ovarian and primary peritoneal cancer symptoms. Report to any of the following symptoms that persist for several weeks and are a change from normal to your doctor:
    • pelvic or abdominal pain
    • bloating or distended belly
    • difficulty eating
    • feeling full sooner than normal
    • increased urination or pressure to urinate 
  • Routine ovarian cancer screening using transvaginal and a blood test has not shown benefit and is not recommended.

Other cancer screening and prevention

There has not been enough research to show a benefit from screening and prevention for other cancers in people who have a  mutation. For this reason, experts recommend managing these risks based on family history of cancer. Cancer screening and prevention research studies may be available for people with  mutations. 

People with a  mutation may also qualify for clinical trials looking for more effective screening or prevention for cancer.

Last updated December 30, 2023

Get Support
Get Support

FORCE offers many peer support programs for people with inherited mutations. 

updated: 08/06/2022

Open Clinical Trials
Open Clinical Trials

The following are risk-management studies enrolling people with inherited mutations. Check study listings or contact the study team to see if you are eligible. 

Multiple cancers

cancer

  • NCT03805919: Men at High Genetic Risk for  Cancer. This is a  cancer screening study using  in high risk men. This study is open to men with , , , , , , , , ,  and other inherited mutations.
  • NCT05129605: Cancer Genetic Risk Evaluation and Screening Study (PROGRESS).  This study will look at how well  MRI works as a screening tool for men at high risk for cancer. This study is open to men with inherited mutations in , , , , , , , , , , , , , , , and other genes. 

Ovarian cancer

Pancreatic cancer

Additional risk-management clinical trials for people with inherited mutations may be found here.

updated: 09/11/2022