Lynch Syndrome: Get the Facts

What Is Lynch Syndrome?

Lynch syndrome is a genetic condition that makes people more likely to develop certain cancers. People who have it also have about a 40% to 80% chance of getting colorectal cancer by age 70. They’re also at risk for cancers of the uterus, ovaries, and stomach. And they tend to get cancer at younger ages than other people, often in their 30s and 40s.

Lynch syndrome is sometimes called hereditary non-polyposis colorectal cancer (HNPCC). Other forms of the condition are Muir-Torre and Turcot syndromes, both of which put a person at higher risk of other cancers, and in the case of Muir-Torre, skin lesions.

What Causes It?

It comes from changes in genes that can be passed down in families. If one of your parents has it, you have a 50% chance of getting it too.

How Is It Diagnosed?

Your doctor will take a detailed family history to see how many of your relatives have ever had colon cancer. If you’re high risk, your doctor will send you for genetic counseling and DNA testing. If one person in your family is diagnosed with Lynch syndrome, your other relatives may want to get tested.

It’s very important to get screened if even one of these things is true for you:

  • Three of your relatives had or has colorectal cancer
  • You have a relative under age 50 who has or had colorectal cancer
  • Colorectal cancer has been in two generations of your family (like a great aunt and a cousin, or a grandparent and parent)

What Are the Treatment Options?

If you have Lynch syndrome, be sure to get regular screenings in order to find any cancers at their earliest and most treatable stages. When caught early, colon cancer is 90% curable. If you’re at risk, you should start getting check-ups much earlier than usual.

Exactly when you should first get tested depends on your family history and whether you’ve had DNA testing. Here are some general guidelines:

  • Colonoscopies every one to two years, beginning at age 20 to 25
  • Upper endoscopies every three to five years, starting in the early- to mid-30s
  • Pelvic exams, uterine biopsies, and transvaginal ultrasounds to check the uterus and ovaries once a year starting around age 30. Your doctor may also recommend urine and stool testing plus blood tests to check for liver function.

Colonoscopies are very good at finding colon cancer early. But some people with Lynch syndrome choose to have their colon removed to help prevent cancer from forming. Women who are finished having children may also have their uterus and ovaries removed.

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Tips for Living With Lynch Syndrome

Aside from cancer screenings, living a healthy lifestyle may help you prevent colorectal cancer. Diets high in veggies, fruit, and whole grains can help lower your risk. So can regular exercise, being at a healthy weight, and limiting alcohol. There is some evidence that taking aspirin every day for at least 2 years may decrease the risk of Lynch-related cancer, but more research is needed to find the best dose and length of time for treatment.

WebMD Medical Reference Reviewed by Nayana Ambardekar, MD on December 14, 2017

Sources

SOURCES:

American Cancer Society: "Six Ways to Lower Your Risk for Colon Cancer."

Cleveland Clinic: "Hereditary Non-Polyposis Colorectal Cancer (HNPCC)."

Dana Farber Cancer Institute: "Cancer Genetics & Prevention: Lynch Syndrome."

Johns Hopkins Medicine: "HNPCC."

National Organization for Rare Diseases: "Lynch Syndrome."

Cancer.net: "Lynch Syndrome."

NIH/Genetic and Rare Diseases Information Center: "Turcot syndrome."

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