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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 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 "men" and "women" we are referring to the sex you were assigned at birth.

NCCN risk management guidelines for people with mutations include information on the following cancers:

 

 

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

Colorectal cancer 

Beginning age Recommendation

20-25 (or 2-5 years before the earliest age of colon cancer in the family, if diagnosed before age 25)

High quality colonoscopy every 1-2 years.Speak with your doctor about whether your screenings should be yearly or every two years. Men, people over age 40, and people with a personal history of colon cancer or colon may benefit most from yearly screenings. 
No set age Daily aspirin can decrease the risk for colorectal cancer. The best dose and timing for aspirin is not known. Speak with your doctor about the benefits and risks, best timing and dose.

 

Endometrial cancer 

Beginning age Recommendation Additional information

No set age

Endometrial cancer can often be caught early based on symptom awareness followed by a biopsy. Learn to be aware of the symptoms of endometrial cancer and immediately report any symptoms to your doctor. Keep a diary of menstrual cycles in order to detect any changes in bleeding. 

Symptoms of endometrial cancer include:

  • unusual vaginal bleeding
  • pelvic or abdominal pain
  • bloating or distended belly
  • difficulty eating
  • increased urination or pressure to urinate 
30-35 Discuss the benefits, risks and costs of an endometrial biospsy every 1-2 years with your doctor.  Endometrial cancer screening does not have proven benefit in individuals with . However, endometrial biopsy is an accurate test for finding cancer.
After menopause Discuss the benefits, risks and costs of regular endometrial cancer screening through transvaginal Endometrial cancer screening does not have proven benefit in individuals with . Despite this, some people prefer to undergo regular screening through transvaginal .
After completion of
child-bearing
Discuss the benefits, risks and costs of a risk-reducing hysterectomy (surgical removal of the uterus).  Discuss the benefits, risks and costs of a risk-reducing hysterectomy (surgical removal of the uterus). 
No specified age Speak with your doctor about the benefits, risks and timing of oral contraceptives.  Oral contraceptive pills (birth control) may lower the risk for endometrial cancer associated with .

 

Ovarian and cancer risk management

Beginning age Recommendation Additional information
No set age

Be aware of ovarian cancer symptoms. Report any of the following 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 
After completion of child-bearing Speak with your doctor about the benefits, risks and timing of risk-reducing removal of ovaries and (). 
No set age Have a discussion with your doctor about the benefits and risks of oral contraceptives for lowering ovarian cancer risk. 

Oral contraceptives (birth control pills) may lower the risk for ovarian cancer in people with .

 

Pancreatic cancer screening for people with a family history

There are two tests that are used to look for pancreatic cancer. 

  • Contrast-enhanced magnetic resonance cholangiopancreatography (MRCP) 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.
  • Endoscopic  (EUS) 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 Recommendation
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. 

 

Bladder, kidney and ureteral cancer

Beginning age Recommendation
30-35

For  mutation carriers with a relative with bladder, kidney or ureteral cancer

  • Discuss the benefits, risks, costs and limitations of screening with your doctor.

 

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. 

 

Stomach cancer

Beginning age Recommendation
30-40 (or younger based on family history)

Begin stomach cancer screening using a procedure known as EGD (esophagogastroduodenocopy) and repeat every 2-4 years. 

  • More frequent screening may be recommended based on prior screening findings. 
  • If gastric screening is performed, considered random biopsy to test for H. pylori. If gastric biopsy is not performed, consider non-invasive testing for H. pylori.
    • People who test positive should receive treatment for H. pylori. 

 

Brain cancer

Beginning age Recommendation
No set age Learn the signs of brain cancer and report any symptoms to your doctor.

 

Skin cancer

Beginning age Recommendation
No set age Talk with your doctor about the benefits of having a skin exam every 1-2 years with an expert trained in finding skin changes related to 

 

Other cancer screening and prevention

Guidelines do not address screening or prevention of other cancers for people with  mutations. However, clinical trials may be available.

Last updated December 30, 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 screening and prevention studies are open to people with

Colorectal cancer

Gynecologic 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 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 an in , , , , , , , , , , , , , , , and other genes. 

Pancreatic cancer

  • NCT02206360: Pancreatic Cancer Early Detection Program. This pancreatic cancer screening study uses esophageal  to screen for pancreatic cancer in high-risk people. The study is open to people who have a family history of pancreatic cancer and an  mutation or other mutation linked to increased cancer risk.
  • NCT03568630: Blood Markers of Early Pancreas Cancer.  This pancreatic cancer study involves blood samples taken over time to look for biomarkers of pancreatic cancer in high-risk people. The study is open to people with an  mutation or other mutation linked to increased cancer risk.
  • 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  pancreatic lesions.

Other clinical trials for patients with endometrial cancer can be found here.

 

updated: 03/09/2023