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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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Hereditary Cancer and Genetic Testing > Hereditary Cancer Genes and Risk > By Gene Mutation > APC > Risk Management

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Risk Management for People with an Inherited APC Mutation

Familial adenomatous polyposis (FAP) and atypical FAP (AFAP)

Experts guidelines on risk-management for people with FAP and AFAP are listed below. Importantly, these risks and interventions do not apply to people who have the specific APC variant I1307K. See below for the specific risk-management options for people with that variant. 

 
Beginning age Recommendation

Infants

Physical exam to screen for liver tumors; abdominal and AFP (alpha-fetoprotein) blood levels every 3-6 months until age 5. 
10-15 (people with AFAP may start screening at age 18) Annual high-quality colonoscopy.
Late teenage years Thyroid every 2-5 years, with referral to thyroid expert if findings are abnormal (or more frequently, based on family history of thyroid cancer).
No specified age (depends on personal
history of and individual preferences)		 Risk-reducing colectomy; speak with health care experts about benefits and risks of each colectomy surgical option. See our section on colectomy for descriptions of the different types of procedures. 
After colectomy Sigmoidoscopy (frequency depends on type of surgery and amount of tissue remaining) or pouchoscopy.

20-25 (or earlier, based on family history)

 Upper endoscopy of the stomach and small intestine (frequency depends on number, size, and type of found), typically with a specialized scope that can evaluate the ampullar of Vater.
No specified age Consider capsule endoscopy (this involves swallowing a pill-sized camera that takes photos of your intestines as it travels through your digestive tract) or an endoscopic evaluation of the lower small intestine (called an enteroscopy) may be considered on a case by case basis for individuals felt to have a particular risk of in the lower small intestine (the jejunum and the ileum).
No specified age Routine CT or imaging to evaluate for desmoid tumors is not recommended, but worrisome abdominal symptoms (e.g., unexplained pain) should prompt abdominal imaging. Individuals with known abdominal desmoid tumors may warrant regular surveillance imaging.
No specified age

Learn the signs and symptoms of other FAP-related tumors, including central nervous system cancers and desmoid tumors.
No specified age Speak with your doctor about the benefits and risks of medications and the availability of clinical trials for managing risk of colorectal cancer. 

APC variant I1307K

 

People with the I1307K variant in the APC gene are recommended to begin colorectal cancer screening at age 40 (or younger depending on family history of cancer). Recommendations include a high-quality colonoscopy every 5 years. 

 

Open Clinical Trials
Open Clinical Trials

The following are studies that may be of interest to people with FAP or AFAP:

Last updated November 28, 2023