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Risk Management

Read about different genes that are linked to hereditary cancer, their associated risks and guidelines for screening, preventing and treating cancers in people with inherited mutations in these genes.

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Risk Management for People with Inherited Mutations

The  National Comprehensive Cancer Network (NCCN) provides risk management guidelines for men and women with  mutations. These are listed below. We also 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 "men" and "women" we are referring to the sex you were assigned at birth.

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

Cancer screening and prevention for children

Beginning age Recommendation
infancy Physical exam including neurologic exam every 6–12 months. Special attention should be paid to look for rare cancers. 
infancy Yearly whole body .
infancy Yearly brain (can be performed as part of whole body ).
infancy Yearly to look for adrenal gland cancers. 

 

Cancer screening and prevention for all adults

Beginning age Recommendation
18 Physical exam including neurologic exam every 6–12 months. Special attention should be paid to look for rare cancers. 
18 Yearly whole body .
18 Yearly brain (can be performed as part of whole body ).
18 Yearly skin exam by a .
25 (or younger based on family history) Colonoscopy and upper endoscopy every 2–5 years. 
40 Annual  test and digital rectal exam for cancer.
50 (or younger based on family history) 

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. 

 

Breast cancer screening and prevention for women

Beginning age Recommendation Additional information
18 Learn to be aware of changes in your breasts.  
20 (or earlier based on family history) Breast exam by doctor every 6 months.  
20 Yearly breast with and without contrast.  
30 Yearly .  
No set age Discuss the benefits, risks and costs of double mastectomy with your doctor.

Risk-reducing mastectomy lowers breast cancer risk by 90%, but has not been shown to improve survival. Even after double mastectomy, some breast tissue, and therefore cancer risk remains. 

75 Consider whether to continue, stop or change breast screening.  

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. 

Open Clinical Trials
Open Clinical Trials

The following screening and prevention studies are open to people with a  mutation. 

Whole body screening

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 a or other mutation. The aim of the study is to test a relatively new medical technology called Whole Body Magnetic Resonance Imaging () to see if cancers can be detected at an early which may, in turn, allow for more effective treatment. The investigators have chosen Whole Body scanning because this scan allows doctors to look at the entire body in one examination. By using this technology, participants are not exposed to radiation, which is of particular importance for individuals who have a higher cancer risk due to a diagnosis of LFS.

Pancreatic cancer

  • 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 with a  mutation or other mutation linked to increased cancer risk who also have a family history of pancreatic cancer.
  • 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 or other mutation linked to increased cancer risk.

Visit our Research Search and Enroll Tool to find additional cancer prevention and screening studies. 

Last updated January 02, 2024