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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 guidelines for people with a mutation to manage their cancer risk. We recommend that you speak with a genetics expert who can look at your personal and family history of cancer and can help you decide on a plan for managing your risk. Note that when we use "female" and "male" or "women" and "men" we are referring to the sex you were assigned at birth.

NCCN recommends that all people with an inherited mutation receive education on the signs and symptoms of BRCA2-related cancers. NCCN guidelines for specific cancers are listed below. 


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

Breast cancer risk management in women

Beginning age Recommendation Additional information
18 Learn to be aware of changes in your breasts.  
25 Breast exam by doctor every 6-12 months.  
25 Yearly breast with and without contrast beginning at age 25 and continuing until age 75. If is not available, screening should begin at age 25. 
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 some breast cancer risk remains. 

No set age Discuss the benefits, limitations, risks and costs of medications to lower the risk for breast cancer with your doctor.   Tamoxifen or other estrogen-blocking drugs lower breast cancer risk. Medications or vaccines are being studied in clinical trials.
75 Consider whether to continue, stop or change breast screening.  

 

Risk management for male breast cancer

Beginning age Recommendation
35 Learn how to do a breast self-exam and be aware of changes in your breast.
35 Breast exam by doctor every 6-12 months.
50 (or earlier based on the youngest case of male breast cancer in the family) Have a discussion with your doctor about the benefits, risks and costs of annual mammograms.

 

Ovarian and cancer risk management

Beginning age Recommendation Additional information
40-45 (or earlier based on the youngest case of ovarian cancer in the family)  

Risk-reducing removal of ovaries and (). Timing of surgery should take into account plans to have children. 

  • Salpingo-oophorectomy in people with mutations has been linked to longer survival compared to people who have not had surgery. 
  • Discuss options for managing the effects of early menopause with your doctor.
  • After , a very small risk remains for a related cancer known as primary peritoneal cancer (PPC). There is no effective screening for PPC.
40-45 Have a discussion with your doctor about the risks, benefits and costs of removing your uterus (hysterectomy) at the time of .

The following factors may affect your decision about hysterectomy at the time of RRSO:   

  •  mutations may be linked to a small increase in the risk for a rare but aggressive type of uterine cancer.
  • If you have a medical history of fibroids or other issues involving the uterus or cervix you might consider a hysterectomy.
  • If you are considering hormone replacement, the type of hormone recommended depends on whether or not you have your uterus. 
    • alone increases the risk for uterine cancer. 
    • combined with progesterone protects against uterine cancer, but is linked to a higher risk for breast cancer than alone.  
Before age 50

Researchers are studying whether the removal of the  only (), while delaying until closer to the age of natural menopause is a safe option for lowering risk in people who are not ready to remove their ovaries. If you are interested in this approach, talk with your doctor about the benefits and risks, and consider enrolling in a research study.

  • At this time, it is not known if lowers the risk for ovarian cancer in high-risk people. 
  • , followed by delayed  requires two separate surgeries.
No set age Oral contraceptives (birth control pills) have been shown to lower the risk for ovarian cancer in people with  mutations. Have a discussion with your doctor about the benefits and risks of oral contraceptives for lowering ovarian cancer risk. 

Research on the affect of oral contraceptives on breast cancer risk has been mixed.

No set age

Become aware of ovarian and primary peritoneal cancer symptoms. Report to any 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 

 

Guidelines for pancreatic cancer risk management

There are two tests that are used to look for pancreatic cancer in high-risk people. 

  • MRCP (Contrast-enhanced magnetic resonance cholangiopancreatography) 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.
  • EUS (Endoscopic ) involves passing a tiny scope with an attached  probe down the esophagus to the stomach. This allows doctors to look closely at the pancreas.  

There are two separate organizations with guidelines related to screening for pancreatic cancer in people with mutations, the American Society of Gastrointestinal Endoscopy (ASGE) and the National Comprehensive Cancer Network (NCCN).  The guidelines differ on who should receive screening based on gene mutation and family history. 

Organization Beginning age Family history Recommendation
ASGE 50 (or earlier based on the youngest case of  pancreatic cancer in the family) For  mutation carriers regardless of family history of pancreatic cancer

Annual  screening for pancreatic cancer with MRI/MRCP or EUS  

NCCN 50 (or earlier based on the youngest case of  pancreatic cancer in the family) 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. 

 

Guidelines for cancer

  • Begin  cancer screening at age 40 with an annual digital rectal exam and Specific Antigen () test. 

cancer

Beginning age Recommendation
40

Annual digital rectal exam and Specific Antigen () test. 

 

Other cancers

Melanoma screening

NCCN does not include guidelines for melanoma screening for people with  mutations. However, some experts recommend general melanoma risk management such as a yearly full-body skin exam, a yearly eye exam and avoiding too much sun exposure.

Other cancer screening and prevention

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 these risks based on your family history. Cancer screening and prevention research studies may be available.

Last updated December 01, 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 looking at level of risk or risk-management for people with inherited or mutations. Check study listings or contact the study team to see if you are eligible. 

Multiple cancers

Breast cancer

cancer

Ovarian cancer

Pancreatic cancer

Additional risk-management clinical trials for people with inherited mutations may be found here.

updated: 09/11/2022