Hereditary Cancer and Genetic Testing

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 to 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

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


Breast cancer screening and prevention

  • Clinical breast exams every 6-12 months beginning at age 30.
  • Annual  (consider 3D if available) and breast with contrast beginning at age 30.
  • Women should have a discussion with their doctors about of the advantages and disadvantages of risk-reducing mastectomy.


Ovarian cancer prevention 

  • The National Comprehensive Cancer Network (NCCN) guidelines recommend that ovarian cancer risk be managed based on family history.  
  • Some experts recommend risk-reducing salpingo-oophorectomy after age 50 to their patients with mutations.


Pancreatic cancer screening for people with a family history

  • For  mutations carriers with a first- or second- degree relative with pancreatic cancer consider screening beginning at age 50 or 10 years younger than the age of diagnosis of the relative. 
  • For mutation carriers who choose pancreatic cancer screening, NCCN recommends that the screening be performed in an experienced facility. Before undergoing screening, people should have a conversation with their doctor about the potential benefits, risks, costs and limitations of screening.
  • Consider annual screening with contrast-enhanced MRI/MRCP (magnetic resonance cholangiopancreatography) and/or EUS (endoscopic ).
  • Consider enrolling in a research study looking at methods to screen for cancer, or agents to lower risk. 

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 family history of cancer. Cancer screening and prevention research studies may be available for people with  mutations. 

find-support find-support

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

updated: 03/12/2022

paying-for-service paying-for-service

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. Visit our section on Insurance and Paying for Care: Screening and Prevention for more information. 

updated: 01/23/2022

clinical-trials clinical-trials

The following are risk-management studies enrolling people with inherited mutations. Check study listings or contact the study team to see if you are eligible. 

Multiple 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 , , , , , HOXB13, , , ,  and other inherited 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 inherited mutations in , , , , , , HOXB13, , , , , , , , , and other genes. 

Ovarian cancer

Pancreatic cancer

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

updated: 03/14/2022

Last updated March 15, 2022