Hereditary Cancer and Genetic Testing

Risk management for people with inherited STK11 mutations

The National Comprehensive Cancer Network (NCCN) provides risk management guidelines for men and women with STK11 mutations. These are listed below. We also 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. Consider enrolling in a research study looking at other ways to screen for or prevent cancer. 


Breast cancer in women

  • Learning to be aware of changes in breasts beginning at age 18. 
  • Clinical breast exam every 6 months starting at age 25.
  • Annual breast MRI with contrast (or mammogram if MRI is unavailable) beginning at age 25.
  • Annual mammogram beginning at age 30 (consider 3D mammography, if available).


Ovarian, cervical and endometrial cancer

  • Yearly pelvic exam and Pap smear beginning at age 18-20.


Testicular cancer 

  • Yearly testicular exam and observation for feminizing changes (e.g., breast enlargement) beginning at age 10.


Gastrointestinal cancers

  • Colonoscopy every 2-3 years beginning in late teens.
  • Upper endoscopy every 2-3 years beginning in late teens.
  • Small bowel screening with CT or MRI.  Baseline at age 8-10 years.After baseline exam, follow-up small bowel screening every 2-3 years, beginning at age 18.


Pancreatic cancer

  • Consider pancreatic cancer screening every 1-2 years, beginning at age 30-35 (or 10 years younger than the earliest case of pancreatic cancer in the family), using one or both of the following:
    • contrast-enhanced MRI/magnetic resonance cholangiopancreatography (MRI/MRCP)
    • endoscopic ultrasound (EUS)
  • Before undergoing screening, people should have a conversation with their doctor about the potential benefits, risks, costs and limitations of screening.
  • NCCN recommends that the screening be performed in an experienced facility, ideally under research conditions. 


Other cancer 

  • Provide information about lung cancer and quitting smoking.

There has not been enough research to show a benefit from screening and prevention for other cancers in people who have a STK11 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 STK11 mutations. 

find-support

If you are a person with an STK11 mutation, you can find peer support through the following resources:

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. 

clinical-trials

The following screening and prevention studies are open to people with an STK11 mutation. 

Pancreatic cancer