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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 people with inherited  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 "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 risk management for all people with mutations

Beginning age Recommendation
7 Annual thyroid
Children diagnosed with mutation Exam by a neurologist and brain if there are symptoms.
18 (or 5 years earlier than the earliest cancer diagnosis in the family) Annual physical exam by doctor. 
No set age Annual skin exam. 
35 (or earlier if symptoms or if a close relative had colorectal cancer before age 40) Colonoscopy every 5 years.
40 Discuss the benefits, risks and costs of kidney ultrasounds every 1-2 years.


Cancer risk management in women with mutations

Cancer type Beginning age Recommendation Additional information
Breast 18 Learn to be aware of changes in your breasts.  
25 Breast exam by doctor every 6-12 months.  
30-35 Yearly breast with and without contrast.   
30-35 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. 

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.
Endometrial By age 35 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 
By age 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 mutations. However, endometrial biopsy is an accurate test for finding cancer.
After menopause Discuss the benefits, risks and costs of screening using transvaginal with your doctor.  Transvaginal is not recommended for screening in premenopausal women. 
After completion of child-bearing Discuss the benefits, risks and costs of a risk-reducing hysterectomy (surgical removal of the uterus).   


Other cancers

There has not been enough research to show a benefit from screening and prevention for other cancers in people who have a  mutation. For this reason, experts recommend managing other cancer risks based on family history.  Cancer screening and prevention research studies may be available for people with  mutations.

Get Support
Get Support

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

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 are studies enrolling people with inherited mutations.  

Last updated January 01, 2024