Lynch Syndrome Screening and Treatment Program

What is Lynch Syndrome?

Lynch syndrome is a hereditary (genetic) condition that causes an increase in risk for certain cancers. It is also known as Hereditary Non-Polyposis Colorectal Cancer (HNPCC) syndrome. People with Lynch syndrome are at increased risk of colon, uterine, stomach, ovarian, small bowel, urinary tract and other types of cancers. Having Lynch syndrome does not mean you will get these cancers, but it does mean you are at an increased risk.

Lynch Syndrome Screening & Personalized Treatment – Expert Care

The Lynch Syndrome Screening and Treatment Program at Mass General Cancer Center gives complete, personalized, and lifelong care for patients and families with Lynch syndrome. As part of Mass General Cancer Center’s Center for Cancer Risk Assessment, the Lynch syndrome program has a team of experts in genetics, gastroenterology, urology, dermatology, endoscopy, imaging, surgery, oncology, and social work. These experts work together to coordinate genetic testing, cancer screening, and medical management for patients with Lynch syndrome. Our experienced clinicians work together to make sure that you receive all the necessary cancer screening tests in a timely manner. They will also help coordinate your referrals to different specialists and follow-up appointments based on your personal management plan.

The program stays up to date on the latest scientific knowledge and national guidelines for managing Lynch syndrome. The program’s director, Daniel Chung, MD, has been involved in the development of national guidelines for Lynch syndrome management. Patients in the program receive long-term care and have regular clinical visits where they can discuss their screening test results, plan future cancer prevention and screening, explore opportunities to potentially participate in research related to Lynch syndrome, and address any concerns about at-risk family members.

The Lynch Syndrome Screening and Treatment Program provides expert and lifelong care for individuals and families affected by Lynch syndrome and makes sure they get the best possible medical management and support.

Who is the Lynch Syndrome Screening and Treatment Program Right For?

The Lynch Syndrome Screening and Treatment Program helps people who have Lynch syndrome or a family history of Lynch syndrome. Our program is for people who have any of the following:

1. You have had genetic testing and a harmful inherited change (called a “pathogenic variant (PV)” or "mutation") was found in one of the Lynch syndrome genes: MLH1, MSH2, MSH6, PMS2, or EPCAM.
2. You have a family history of Lynch syndrome.
3. Have been diagnosed with cancer or have a family history of cancer that could be related to Lynch syndrome.
4. Have had a previous tumor test that showed markers of Lynch syndrome.
5. Have received genetic testing results that were negative or inconclusive but still worry about Lynch syndrome.

We are here to help you understand Lynch syndrome better and offer appropriate treatment and screening options.

Lifetime Cancer Risks for People with Lynch Syndrome

^{*These risks are based on individuals who did not have regular screening and/or other treatments such as preventive surgery. There are data suggesting that people with Lynch syndrome can significantly decrease their risk of developing cancer by careful medical and surgical follow-up.
*The specific cancer risks differ based on the affected Lynch syndrome gene: MLH1, MSH2, MSH6, PMS2, or EPCAM.}

Lynch syndrome is inherited through DNA, meaning it can be passed down within families. People with Lynch syndrome often have multiple family members who have had cancer, sometimes at a young age. In the United States, Lynch syndrome affects about 1 in 300 people, although most individuals are not aware they have it.

Lynch syndrome is caused by having a pathogenic variant (harmful change) in one of the following five genes: MLH1, MSH2, MSH6, PMS2, or EPCAM. These genes are responsible for fixing mistakes that happen during a process called DNA replication. A pathogenic variant, also known as a mutation, is a change that is believed to stop the gene from working properly. When there are pathogenic variants in these genes, the body may have trouble fixing the mistakes, which can increase the risk of cancer. The specific cancer risks depend upon which one of these genes is involved. Learn more about these genes and view fact sheets on Lynch syndrome here.

It's important to know about Lynch syndrome and its potential risks. The cancer risks in the chart above are based on people who did NOT have regular screening and/or other treatments. People with Lynch syndrome can significantly decrease their risk of developing cancer with careful medical follow-ups, which are available at the Lynch Syndrome Screening and Treatment Program at Mass General Cancer Center.