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.Stay up to date on research and information
Sign Up for FORCE NewslettersRisk 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
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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. |
The following screening and prevention studies are open to people with a mutation.
Whole body screening
- NCT02950987: Screening With Whole Body For Detection Of Primary Tumors In Children And Adults With (LFS) And Other Cancer Predisposition Syndromes.
- NCT01443468: Clinical and Genetic Studies of . Participants will be monitored for several years, with regular followup visits to the National Institutes of Health, if indicated. Any changes in health or cancer status will be recorded.
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.