Preventing Lynch Syndrome-Related Colorectal (Colon) and Other Cancers

Key points

  • If you have Lynch syndrome, you should be screened for colorectal (colon) cancer using colonoscopy. You may need screenings more often and starting at an earlier age than most people.
  • Talk to your healthcare provider about screening for other Lynch-syndrome related cancers.
Reminder on to do list to schedule a colonoscopy

Medical options

Several medical options are available for managing cancer risks in people who have Lynch syndrome. These options all have risks and benefits and should be discussed with a healthcare provider before making any medical decisions.

Lynch syndrome-related cancers‎

People with Lynch syndrome are more likely to get colorectal (colon), uterine (endometrial), ovarian, stomach, small intestine, urinary tract (kidney, ureter, bladder), biliary tract (liver, gall bladder, bile ducts), pancreatic, prostate, brain, and some skin cancers.

Colonoscopies every 1-2 years starting between the ages of 20-25 (or 2-5 years before the earliest colorectal cancer in the family) are the most effective way to prevent colorectal cancer.

Other available options may reduce the chance of developing cancer or improve the likelihood of detecting it earlier, but the effectiveness of these options is less certain and should be discussed with a healthcare provider. Options include the following:

  • Daily aspirin use to reduce the risk of colorectal cancer
  • Transvaginal ultrasound and endometrial biopsy every 1–2 years, beginning at age 30–35 years, to detect endometrial cancer
  • CA-125 blood tests every year to detect ovarian cancer
  • Hysterectomy and bilateral salpingo-oophorectomy to prevent gynecologic cancers
  • Upper endoscopies every 2-4 years starting between the ages of 30-40 to detect stomach and small bowel cancer
  • One time test for H. pylori at the time of Lynch syndrome diagnosis
  • Urinalysis every year starting between the ages of 30-35 to detect urinary tract cancer
  • Pancreatic cancer screening using contrast-enhanced MRI/MRCP and/or EUS, starting at age 50 (or 10 years before earliest pancreatic cancer in the family) for those with a family history of pancreatic cancer
  • Yearly prostate cancer screening starting at age 40
  • Skin exams every 1-2 years
  • Education on signs and symptoms of brain cancer and awareness of need to immediately report abnormal symptoms

Colorectal cancer screening saves lives‎

Screening for colorectal cancer is important because it can prevent colorectal cancer and find it early. Most colorectal cancers start as precancerous polyps, or abnormal growths in the colon or rectum, that can be removed during a colonoscopy before they develop into cancer. (Not all polyps turn into cancer.) Most colorectal cancers grow slowly and do not produce symptoms right away, so screening is important to find these tumors early, when treatments are more likely to work.

Lynch syndrome and gynecologic cancers

If you are a woman with Lynch syndrome, you are more likely to get uterine (endometrial) and ovarian cancer. Since there is no simple and reliable way to screen for these cancers, it is especially important to recognize warning signs. Talk to your healthcare provider if you experience symptoms of gynecologic cancers that include the following:

  • Abnormal vaginal bleeding, especially if you are past menopause
  • Pain or pressure in the pelvic area
  • Abdominal or back pain
  • Bloating
  • Feeling full too quickly or difficulty eating
  • A change in your bathroom habits, such as more frequent or urgent need to urinate, or constipation