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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 will look at your personal and family history of cancer and help you make decisions about how to manage your risk for cancer. 

Note: "men" and "women" refers to the sex you were assigned at birth.

Breast cancer risk management in women

Beginning age Recommendation Additional information
25 Learn to be aware of changes in your breasts. Based on NCCN guidelines for women of average risk. 
25 Breast exam by doctor every 1-3 years. Based on NCCN guidelines for women of average risk. 
30-35 Discuss the benefits, risks and costs of yearly breast with and without contrast with your doctor.   
40 (or earlier based on family history of breast cancer) Yearly .  
No set age More research is needed to show whether people with inherited mutations benefit from risk-reducing mastectomy. Discuss with your doctor about the option of risk-reducing mastectomy based on your personal and family history of cancer.  
No set age Discuss the benefits, risks and costs of medications to lower the risk for breast cancer with your doctor.   Tamoxifen or other estrogen-blocking drugs may lower breast cancer risk. Medications or vaccines are being studied in clinical trials.

 

Ovarian and cancer risk management

Beginning age Recommendation Additional information
No set age

Become aware of ovarian and primary peritoneal cancer symptoms. Report to any symptoms that persist for several weeks and are a change from normal to your doctor. 

Routine ovarian cancer screening using transvaginal and a blood test has not shown benefit and is not recommended.

Symptoms of ovarian cancer include:

  • pelvic or abdominal pain
  • bloating or distended belly
  • difficulty eating
  • feeling full sooner than normal
  • increased urination or pressure to urinate 
No set age More research is needed to show whether people with inherited mutations benefit from risk-reducing surgery to remove their ovaries and . Currently, experts recommend that you have a discussion with your doctor about the option of risk-reducing surgery based on your family history of cancer.

 

Before age 50

Researchers are studying whether the removal of the  only (), while delaying until closer to the age of natural menopause is a safe option for lowering risk in people who are not ready to remove their ovaries. If you are interested in this approach, talk with your doctor about the benefits and risks, and consider enrolling in a research study.

  • At this time, it is not known if lowers the risk for ovarian cancer in high-risk people. 
  • , followed by delayed  requires two separate surgeries.
No set age Oral contraceptives (birth control pills) have been shown to lower the risk for ovarian cancer. Have a discussion with your doctor about the benefits and risks of oral contraceptives for lowering ovarian cancer risk. 

Research on the affect of oral contraceptives on breast cancer risk has been mixed.

 

Pancreatic cancer screening

There are two tests that are used to look for pancreatic cancer in high-risk people. 

  • MRCP (Contrast-enhanced magnetic resonance cholangiopancreatography) is a special type of  imaging that looks closely at the pancreas, liver, gallbladder, bile duct and pancreatic duct to find abnormalities such as cancer.
  • EUS (Endoscopic ) involves passing a tiny scope with an attached  probe down the esophagus to the stomach. This allows doctors to look closely at the pancreas.  
Beginning age Family history Recommendation
50 (or earlier based on the youngest case of  pancreatic cancer in the family) For  mutation carriers with a first- or second- degree relative with pancreatic cancer
  • Discuss the benefits, risks, costs and limitations of screening with your doctor.
  • Screening should include annual MRCP or EUS or both. 
  • Screening should be performed in a facility with experience in screening high-risk patients for pancreatic cancer. 

 

cancer

Beginning age Recommendation
40
  • Have a conversation with your doctor about the potential benefits, risks, costs and limitations of screening for cancer. 
  • If you choose to have screening, the guidelines recommend an annual digital rectal exam and Specific Antigen () test. 

 

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 an mutation. For this reason, experts recommend managing these risks based on your family history. Cancer screening and prevention research studies may be available.

Last updated November 27, 2023

Get Support
Get Support

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

updated: 08/06/2022

Paying For Care
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
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