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

Breast cancer risk management for women

Breast cancer screening

  • Learn to be aware of changes in your breasts beginning at age 18.
  • Breast exam by doctor every 6-12 months beginning at age 25 (or 10 years earlier than the youngest age of onset in the family).
  • Yearly  and breast with contrast beginning at age 30-35 (or 5-10 years earlier than the youngest breast cancer in the family).  

Risk-reducing mastectomy

Have a discussion with your doctor about of the benefits and risks of double mastectomy.

    • Risk-reducing mastectomy can lower the risk for breast cancer by about 90%. Despite this, mastectomy may not increase your overall survival.
    • Even after double mastectomy, some breast tissue is left over, and therefore some breast cancer risk remains after surgery. 
  • Tamoxifen and other estrogen-blocking drugs may reduce breast cancer risk in women with mutations, but more research is needed to prove this.

Endometrial cancer risk management

  • Symptom awareness and biopsy: Endometrial cancer can often be caught early based on symptom awareness followed by a biopsy. Be aware of endometrial cancer symptoms and immediately report any of the following to your doctor: 
    • unusual vaginal bleeding
    • pelvic or abdominal pain
    • bloating or distended belly
    • difficulty eating
    • increased urination or pressure to urinate 
  • Keep a calendar of their menstrual cycle and note any irregular bleeding or any postmenopausal bleeding.
  • Have a conversation with your doctor about the benefits, risks and costs of each of the following options:
    • hysterectomy (surgical removal of the uterus)
    • endometrial biopsy every 1 to 2 years beginning at age 35
    • if you are postmenopausal, yearly screening with transvaginal

Other cancers

The National Comprehensive Cancer Network (NCCN) guidelines recommend:

  • Annual comprehensive physical exam beginning at age 18 or 5 years earlier than the earliest cancer diagnosis in a family.
  • Annual thyroid beginning at age 7.
  • Colonoscopy beginning at age 35 unless symptomatic or if a close blood relative had colon cancer before age 40. Continue screening every 5 years.  
  • Consider renal beginning at age 40 then every 1-2 years.
  • Annual skin exams.
  • Consider psychomotor assessment in children at diagnosis and brain if there are symptoms.

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.

Last updated March 12, 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 are studies enrolling people with inherited mutations.  

updated: 05/30/2023