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 determine the best risk management plan. You can learn more about risk management options in our section on Screening and Risk Reduction by Cancer Type. Note that when we use the term "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.
Breast cancer screening and prevention for women
- Yearly beginning at age 40 or 5-10 years younger than the earliest age of diagnosis in the family (but no later than age 40).
- Talk with your doctor about the benefits, risks and costs of yearly breast with contrast beginning at age 40 or 5-10 years younger than the earliest age of diagnosis in the family.
- Tamoxifen and other estrogen-blocking drugs may reduce breast cancer risk for women with a mutation, but more research is needed to prove this.
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 your family history. Cancer screening and prevention research studies may be available.
Get Support
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
updated: 08/06/2022
Related Resources
The following resources focus on , and mutations:
- Video: Cancer Risks, Screening & Prevention for People w/ , , & Other Genes
- FORCE's eXaming the Relevance of Articles for You (XRAY) program looks behind the headlines of cancer news to help you understand what the research means for you.
updated: 02/07/2023
Paying For Care
Health plan coverage of screening and prevention varies, and deductibles, coinsurance and copays often apply. If you need preventive services and your insurance company denies your claim, your health care provider can help you write an appeal letter, or you can use one of our sample appeal letters. If you need information about finding an insurance plan, watch our video: Choosing Wisely: How to Pick Insurance Plans.
Visit our section on Insurance and Paying for Care: Screening and Prevention for more information.
updated: 11/15/2022
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
- NCT02665195: Registry Of MultiPlex Testing (PROMPT). PROMPT is an online research registry for people who have had genetic panel testing. The goal of the PROMPT Registry is to follow people with mutations or variants in genes on these panels, so that patients, physicians and researchers can more clearly understand these lesser-known risks. This study is open to people with an inherited mutation or in a number of different genes, including: , , , , , , and others.
- The Risk Factor Analysis of Hereditary Breast and Ovarian Cancer In Women with , or Mutations This study seeks to improve researchers’ understanding of how hormonal, reproductive and lifestyle factors may be associated with cancer in this high-risk population.
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 , , , , , HOXB13, , , , 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 , , , , , , HOXB13, , , , , , , , , and other genes.
Ovarian cancer
- Validating a Blood Test for Early Ovarian Cancer Detection in High-risk Women and Families: MicroRNA Detection Study (MiDE). The goal of MiDe is to develop a test to detect ovarian cancer. Participants can be expected to provide up to 4 tubes of blood every 6 months for up to 5 years. We can collect these samples through mobile phlebotomy all around the US. The study is enrolling people with , , , , , , and other mutations.
- NCT05287451: Risk Reducing With Delayed as an Alternative to Risk- Reducing Salpingo-oophorectomy in High Risk-Women to Assess the Safety of Prevention. This study will look at outcomes in women with , , , and who remove their first, followed by removal of their ovaries compared to women who undergo standard-of-care removal of their ovaries and at the same time.
Pancreatic cancer
- NCT03250078: A Pancreatic Cancer Screening Study in Hereditary High Risk Individuals. The main goal of this study is to screen and detect pancreatic cancer and precursor lesions in individuals with a strong family history or genetic predisposition to pancreatic cancer. and Magnetic cholangiopancreatography (MRI/MRCP) will be utilized to screen for early pancreatic lesions.
- NCT02206360: Pancreatic Cancer Early Detection Program. This pancreatic cancer screening study uses esopheal to screen for pancreatic cancer in high risk people. The study is open to people who have an inherited mutation in one of the following genes: , , , CDKN2A, , or .
- NCT03568630: Blood Markers of Early Pancreas Cancer. This pancreatic cancer study involves blood samples over time to look for biomarkers of pancreatic cancer in high risk people. The study is open to people with a mutation linked to increased cancer risk.
- NCT02478892: Preliminary Evaluation of Screening for Pancreatic Cancer in Patients with an Inherited Genetic Risk Due to a , , or Mutation. This study uses and endoscopic to screen for pancreatic cancer in people with a BRCA1/2, or mutation.
Additional risk-management clinical trials for people with inherited mutations may be found here.
updated: 09/11/2022