Lynch Syndrome

Defining Lynch syndrome, a common hereditary cancer condition

Lynch syndrome is among the most common hereditary cancer syndromes. In fact, as many as 1 in 300 people may have a mutation in one of the five genes associated with Lynch syndrome. This means about 1 million people live with Lynch syndrome, yet many don’t know they have it.

People who have Lynch syndrome have an increased chance of developing colorectal and endometrial cancers as well as other cancers. At The University of Kansas Cancer Center, the region’s only National Cancer Institute-designated cancer center, our certified genetic counselors facilitate genetic testing to identify individuals who have Lynch syndrome. Taking this step helps ensure our patients receive appropriate cancer screening, which can improve the chances of preventing or diagnosing cancers early, when they are most treatable.

Who is at risk for Lynch syndrome?

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 percent 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 with Lynch syndrome tend to have certain characteristics. These include:

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

Family cancer history chart

If any of these apply to your family, then you might want to seek genetic counseling. It doesn’t, however, always mean you have Lynch syndrome.

Source: American Cancer Society

How can I tell if I have Lynch syndrome?

Also known as hereditary nonpolyposis colorectal cancer syndrome (HNPCC), people with Lynch syndrome often have a family history of colorectal cancer. However, Lynch syndrome also increases the risk of developing other cancers, such as uterine (endometrial), stomach, ovarian, biliary tract, upper urinary tract, brain, skin and pancreas. A strong family history of such cancers can indicate the possibility of Lynch syndrome.

At The University of Kansas Cancer Center, every colorectal and endometrial cancer is screened for Lynch syndrome.

When should I see my doctor?

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 will determine whether you have inherited a mutation in one of the 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. For instance, if the tests show that you do have Lynch syndrome, it is recommended to offer genetic testing to other family members so that they, too, can better determine their risk and appropriate cancer screenings.

Keep in mind that screening for colorectal cancer is recommended for anyone 50 or older, regardless of family history, but those who have a family history of colorectal cancer, especially in people younger than 50, and people who are identified as having Lynch syndrome need to be screened earlier and more often. Colorectal cancer screening doesn’t just diagnose – in many cases it can actually prevent colorectal cancer, making it a potentially life-saving test. In fact, 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.

What should I do if I have Lynch syndrome?

If you’ve received a diagnosis of Lynch syndrome, 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 and surveillance guidelines for Lynch syndrome.

Caring for high-risk patients

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 cancer center, we are committed to making a difference for patients using the latest, most advanced treatments, investigational 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.

Learn more

Learn more about colon cancer screening and prevention, call 913-588-1227.
To schedule an appointment with a genetic counselor or learn more about genetic testing, call 913-588-5568.