Lynch Syndrome Center

Contact the Lynch Syndrome Center

Lynch syndrome is a common and often under-diagnosed inherited condition that increases one's risk for a variety of cancers, including colon, rectal, uterine, ovarian, urinary tract, and other malignancies. Dana-Farber Cancer Institute's Lynch Syndrome Center is the largest and most comprehensive multidisciplinary cancer genetics group in the region that specializes in coordinating the care of people with Lynch syndrome.

The Center's mission is to provide personalized and comprehensive care for families with Lynch syndrome, supported by world-class research and state-of-the-art diagnostics. As part of Dana-Farber's Center for Cancer Genetics and Prevention, our specialists help manage the comprehensive care of individuals and families with Lynch syndrome by providing genetic testing for individuals at risk for Lynch syndrome, creating personalized screening plans aimed at preventing Lynch syndrome-related cancers, and coordinating care with experts in surgery, gastroenterology, dermatology, and oncology.

Experts in Lifelong Care

Scientific knowledge about Lynch syndrome cancer risk and prevention strategies is constantly evolving. The Center founder, Dr. Sapna Syngal, has been involved in the development of national guidelines used to best manage Lynch syndrome. We ensure that our patients' personalized management plans are up-to-date with cutting-edge research and state-of-the-art national guidelines. The Center sees our Lynch syndrome patients and families on a long-term basis. At clinical visits, our patients have the opportunity to review the results of their screening tests with their Lynch syndrome provider, plan and revise strategies for future cancer prevention and screening, explore opportunities to participate in Lynch syndrome-related research, and discuss any implications for other at-risk family members.

Patients and Families

The Lynch Syndrome Center specializes in caring for individuals with a diagnosis of Lynch syndrome (LS) or who have a family history of LS. We recommend our services to individuals who:

Have previously had genetic testing demonstrating a harmful inherited change (called a "mutation") in one of the Lynch syndrome genes: MLH1, MSH2, MSH6, PMS2, or EPCAM
Have a relative who carries a harmful inherited variant in one of the Lynch syndrome genes
Have a cancer diagnosis and/or a family history of cancer that is suggestive of Lynch syndrome
Have had testing of a prior tumor that was suggestive of Lynch syndrome
Have had negative or inconclusive genetic testing results, but are still concerned about Lynch syndrome
Are seeking information about Lynch syndrome

What to Expect From Your First Lynch Syndrome Center Visit

Matthew Yurgelun, MD, a gastrointestinal medical oncologist and Director of the Lynch Syndrome Center at Dana-Farber Cancer Institute describes how the Center provides coordination of care and individual care plans for Lynch syndrome patients through a team of dedicated physicians, nurse practitioners, genetic counselors and other Lynch syndrome specialists.

Our Clinical Services

Diagnosis

Genetic counseling and testing are recommended for individuals who may be at risk for Lynch syndrome.

At your first visit in the Lynch Syndrome Center, you will typically meet with both a genetic counselor and a physician with expertise in Lynch Syndrome. During these visits, a comprehensive analysis of your own history and your family's history of cancer will be performed to help understand your own cancer risk and devise future cancer screening and prevention strategies.
If genetic testing is recommended, we will collect a blood or saliva sample from you and send it to a lab for analysis of the Lynch syndrome genes and possibly other cancer susceptibility genes. Prior to this testing, our genetic experts will review with you all questions and concerns regarding genetic testing to make sure this is the right approach for you. Once genetic testing results are available, we will discuss the results with you and work to devise the optimal cancer screening and prevention plan for you, as well as discuss potential implications for other individuals in your family.
If you are found to have Lynch syndrome, you will receive ongoing follow-up from our care team, including regular cancer screenings such as colonoscopies. A wide range of other specialists, including gynecologists, oncologists, urologists, and psychologists are also available to talk with you and your family. We will refer you to other providers as needed.

Maintaining Your Health

We offer comprehensive clinical care for our patients, acting as your advocate. Our experienced clinicians will collaborate with your primary care provider, gastroenterologist, gynecologist, and other health care providers to ensure that you are getting all the cancer screening procedures you need in a timely manner. Specialists involved in your care may include the following:

Gastroenterologists for colonoscopies and endoscopies
Gynecologists for uterine and ovarian cancer prevention
Dermatologists for skin evaluations
Urologists for urinary tract cancer screening and prevention
Medical oncologists and surgeons for Lynch syndrome patients with cancer

Our scheduling staff and Lynch syndrome nursing experts can help coordinate your multidisciplinary referrals and follow-up appointments, based on your personalized management plan.

Caring for Lynch Syndrome Patients and Families

The Lynch Syndrome Center at Dana-Farber provides comprehensive care for patients and families who have a diagnosis or family history of Lynch syndrome.

About Lynch Syndrome

What Is Lynch Syndrome?

Lynch syndrome is an inherited condition that increases your risk for certain types of cancer. Lynch syndrome is the most common form of hereditary colorectal and uterine cancer and accounts for about 2 to 4 percent of cases of these cancers. Families with Lynch syndrome usually have several members who have developed cancer, sometimes occurring at unusually young ages (many times before the age of 50). Colorectal or uterine cancer are the most common cancers in Lynch syndrome families. Other cancers that can be seen in families with Lynch syndrome include: ovarian, urinary tract (bladder, kidney, ureter), stomach, small intestinal, pancreatic, and biliary tract cancers, as well as uncommon skin tumors known as sebaceous adenomas and carcinomas. Having Lynch syndrome does not guarantee that someone will get any of these cancers, but does increase one's risk of cancer.

What Causes Lynch Syndrome?

Lynch syndrome is caused by an inherited alteration in one of five genes: MLH1, MSH2, MSH6, PMS2, and EPCAM. The first four of these genes are involved in a process called mismatch repair - they act like spellcheckers to find and correct the "typos" made in the gene copying process. Mutations (harmful changes) in any one of these genes can lead to the accumulation of more and more of these mistakes that happen as a normal part of the DNA replication process and can thus predispose a person to cancer. Mutations in the fifth gene, EPCAM, are also a cause of Lynch syndrome because of EPCAM's nearness to the MSH2 gene; certain types of changes in the EPCAM gene can cause the MSH2 gene to shut off. If a person has inherited a mutation in one of these five genes, then they are at risk for developing the cancers seen in Lynch syndrome.

How Common Is Lynch Syndrome?

In the general U.S. population, it is estimated that roughly 1 in 300 people have Lynch syndrome. Yet, the vast majority of individuals with Lynch syndrome are unaware of their diagnosis at present. For someone carrying a Lynch syndrome mutation, the lifetime risk of colorectal cancer is 22 to 74 percent, compared to a 4 to 5 percent risk in someone who does not carry a mutation. The risk of uterine cancer is 15 to 71 percent in women, compared to about 3 percent risk in those who do not carry a mutation. The lifetime risks of the other cancers associated with Lynch syndrome are also higher than the general population.

Learn about our Center's research studies and clinical trials for Lynch syndrome