NCCN Guidelines for risk management for men and women with Lynch Syndrome
Guidelines for women
- Consider risk-reducing removal of ovaries and uterus upon completion of childbearing
- Women should be educated on possible symptoms of ovarian or uterine cancer. They should report any unusual vaginal bleeding, pelvic or abdominal pain, bloating, increased abdominal girth, difficulty eating, or increased urinary frequency or urgency to health care providers immediately
- Consider screening via endometrial biopsy every 1-2 years
- Manage breast cancer risk based on family history
Guidelines for men and women
- Colonoscopy at age 20-25 (or 2-5 years prior earliest colon cancer in the family) every 1-2 years
- There is data suggesting that aspirin can decrease the risk for colon cancer in Lynch Syndrome but the best dosing has not been established
- Consider gastric cancer screening by EGD every 3-5 years beginning at age 40 if there is a family history of gastric cancer and/or Asian ancestry. If gastric screening is performed, considered testing for and treating H. pylori.
- Consider annual urinalysis beginning age 30-35, especially for people from families with a family history of urothelial cancer and men with an MSH2 mutation.
- Consider annual physical and neurological exam starting at age 25-30.
Pancreatic cancer screening is done using two types of medical procedures:
- Magnetic resonance cholangiopancreatography (MRCP) is a special type of imaging MRI that is used to look at the pancreas, liver, gallbladder, bile duct and pancreatic duct.
- Endoscopic ultrasound (EUS) involves passing a tiny scope with an attached ultrasound probe down the esophagus to the stomach. This allows doctors to look closely at the pancreas.
Experts guidelines say:
- People with a mutation in MLH1, MSH2, MSH6 and EPCAM and those with a family history of pancreatic cancer, are encouraged to discuss the pros and cons of annual screening with their health care provider.
- Experts do not currently recommend pancreatic cancer screening for people with a mutation associated with Lynch Syndrome who do not have a close family history of pancreatic cancer.
- For those who decide to undergo pancreatic cancer screening, consider beginning at age 50 or 10 years earlier than the earliest pancreatic cancer diagnosis in the family.
- Screening should begin with annual MRCP and/or EUS (both ideally performed at a center with expertise).
People with a Lynch Syndrome gene mutation may also be eligible for pancreatic cancer screening clinical trials. Visit our research study page for links to clinical trials for early detection of pancreatic cancer.
- For patients of reproductive age, advise about options for prenatal diagnosis and assisted reproduction including pre-implantation genetic diagnosis.
Risk to relatives
- Advise about possible inherited cancer risk to relatives, options for risk assessment, and management.
- Recommend genetic counseling and consideration of genetic testing for at-risk relatives.