Why Have You Never Heard of Lynch Syndrome?

BRCA dominates the headlines, but Lynch syndrome is just as common.

March 22 is Lynch Syndrome Awareness Day. Lynch syndrome is one of only two common hereditary cancer syndromes and one of only three CDC Public Health Genomics priorities. Lynch syndrome is also sometimes referred to as HNPCC (Hereditary Non-Polyposis Colorectal Cancer syndrome).

Lynch syndrome doesn’t have a major celebrity like Angelina Jolie to help bring attention to itbut it’s just as common as mutations in the BRCA genes.

Common Myths about Lynch syndrome:

Myth #1 – If there are no cancers <50yo in the family, it can’t be Lynch syndrome.

Colorectal, uterine, or another LS-related cancer diagnosed at an early age is a reason to suspect Lynch syndrome. But just because cancers in a family aren’t early-onset doesn’t mean it’s Not Lynch syndrome. Three relatives on the same side of the family with LS-cancers diagnosed at Any age is a reason to consider Lynch syndrome.

Myth #2: If there is no colorectal cancer in the family, it can’t be Lynch syndrome.

With mutations in certain genes, the risk for uterine cancer may be as high or higher than the risk for colorectal cancer. Uterine cancer <50yo is a reason to consider Lynch syndrome. Several female relatives with GYN cancers at any age is also a reason to consider Lynch syndrome.

Myth #3: If you’ve already had cancer, there’s really no point in genetic testing for Lynch syndrome.

Learning that you have Lynch syndrome gives you and your healthcare provider important information about your lifetime cancer risks and can help reduce the risk of developing another cancer. Medical management for a patient with Lynch syndrome is very different from what is recommended for individuals of average risk of developing cancer.

  • For an individual with colorectal cancer and Lynch syndrome, surgical recommendations may be different.
  • For an individual with Lynch syndrome, colonoscopies are recommended every 1-2 years–regardless of how many polyps are seen each time.
  • For a woman with Lynch syndrome, removing the uterus and the ovaries is recommended–after having children.

A molecular genetic diagnosis of Lynch syndrome also makes “cascade testing” a possibility for families. By testing each family member for the identified mutation, it’s possible to identify which family members have Lynch syndrome and need more active medical management. 

Want to learn more?

For basic background information on cancer genetics and hereditary cancer, check out this page.

If you’re wondering if you meet criteria for Lynch syndrome testing, you can take this quiz. If you choose to share your results with us, we’ll follow up with you!

Do you meet genetic testing criteria for hereditary breast cancer risk?