Lynch Syndrome

Lynch syndrome is an inherited condition that increases the risk of certain other cancers, such as colon cancer and endometrial cancer. Also called hereditary nonpolyposis colorectal cancer (HNPCC), Lynch syndrome can cause these cancers to develop at an earlier age than is typical. While other inherited syndromes can increase the risk of cancer as well, doctors estimate that Lynch syndrome is responsible for 3 out of every 100 colorectal or endometrial cancers.

Lynch syndrome is a genetic condition that runs in families. The gene mutations that cause Lynch syndrome can be passed on from either the mother or father. If you have a parent with Lynch syndrome, you have a 50% chance of inheriting the syndrome. If Lynch syndrome is identified in one family member, others in the family would benefit from genetic testing to see if they, too, carry the gene mutation.

Families at risk for Lynch syndrome may have:

• Three or more family members with a Lynch syndrome-related cancer
• More than one affected generation of the family
• An individual under age 50 with a Lynch syndrome-related cancer

Genetic testing can determine whether the genetic mutation for Lynch syndrome is present. However, having these factors in your family does not always mean you will develop Lynch syndrome.

Everyone should talk to their doctor about their family health history and individual concerns to create a personalized cancer screening plan. At The University of Kansas Cancer Center, we use recognized risk-prediction models to determine what steps to take next.

If you and your doctor are concerned about Lynch syndrome, a genetic test can show whether you have inherited a mutation in 1 of the 5 Lynch syndrome genes. One of our certified genetic counselors can help you determine the best type of genetic testing, interpret your test results and determine appropriate next steps. If Lynch syndrome testing shows that you do have Lynch disease, we recommend that other family members also get genetic testing to better determine their risk.

We recommend colorectal cancer screening for anyone 45 or older, regardless of family history. However, we recommend screening earlier and more often for those who have Lynch syndrome, or for those who are younger than 45 but have a family history of colorectal cancer.

In many cases, colorectal cancer screening can actually prevent colorectal cancer, making it a potentially life-saving test. Our data show that if people 50 and older were screened regularly, we could prevent 6 of 10 deaths from colorectal cancer. Regular screenings and management can also decrease your risks for uterine (endometrial), stomach, ovarian and urinary tract cancers.

If you’ve received a Lynch syndrome diagnosis, you may be wondering what steps to take next. Genetic mutations that cause Lynch syndrome cannot be changed, but awareness is key in helping to manage the increased risk of Lynch-related cancers. Speak with a certified genetic counselor regarding your individual recommended screening guidelines for Lynch syndrome.

At The University of Kansas Cancer Center, we strive to provide the most advanced care possible. We offer a specialized gastroenterology oncology clinic, gynecologic oncology clinic and a high-risk gastrointestinal clinic for patients with Lynch syndrome or other gastrointestinal conditions. These clinics focus on primary prevention methods like colonoscopy or gynecology screening, formulating surveillance plans and referrals for surgical intervention, if needed.

As an NCI-designated comprehensive cancer center, we are committed to making a difference for patients using the latest, most advanced cancer treatments, innovative therapeutics and chemoprevention. In addition to standard care and treatments, we perform clinical research studies to help find better ways of preventing, diagnosing and treating various types of cancer.