First-Ever Lynch Syndrome Center Offers Genetic Testing, Personalized Screening Plans

Dana-Farber Cancer Institute opens the first-ever Lynch Syndrome Center to help patients and families with the inherited condition.
BY Katie Kosko
PUBLISHED March 28, 2019
Dana-Farber Cancer Institute opened the first-ever Lynch Syndrome Center to help patients and families with the inherited condition.

When it comes to cancer risk and genetics, the BRCA gene mutation is well known. But many have never heard of another inherited condition that also raises a person’s risk for several types of cancer — Lynch syndrome.

As many as 1 in every 300 people may be carriers of an alteration in a gene associated with Lynch syndrome, according to Cancer.Net, the American Society of Clinical Oncology’s patient website. These gene alterations can significantly increase risk of developing colorectal cancer, as well as endometrial, stomach, breast, ovarian, small bowel, pancreatic, prostate, urinary tract, liver, kidney and bile duct cancers.

However, the condition often goes undiagnosed, according to experts from Dana-Farber Cancer Institute in Boston. And now the leading cancer center has opened the first-ever Lynch Syndrome Center. At the center, high-risk individuals will be able to undergo genetic testing, then have access to personalized screening plans aimed at preventing Lynch syndrome-related cancers. They will also have access to experts in surgery, gastroenterology, dermatology and oncology.

“We want to be a resource for folks who are looking for a Lynch syndrome team to coordinate their care,” Matt Yurgelun, M.D., director of the Lynch Syndrome Center, said in an interview with CURE. “One of the frustrating things about Lynch syndrome is that it does potentially involve multiple organ sites throughout the body and so I think a lot of folks over the years found that they may have a great gastroenterologist who is great at managing their GI-related Lynch syndrome issues, but maybe that’s not the right person if they have questions about gynecologic or urinary tract cancers.”

Since Lynch syndrome is an inherited condition, it can be passed down from generation to generation. Therefore, it’s crucial to know family health history, especially if relatives have had cancer. Five genes are associated with Lynch syndrome: MLH1, MSH2, MSH6, PMS2 and EPCAM.

People who feel they may be at risk should work with a genetic counselor and a physician to decide on whether genetic testing is right for them. The genetic counselor would walk the individual through their family tree and explain the upsides and downsides to testing. For those who test positive, a more concrete plan will be laid out upon test results. 

“For a long time, we have been seeing, treating and managing individuals and families with Lynch syndrome and one constant piece of feedback we have heard is that they very much value having us be the quarterbacks of their Lynch syndrome-related care,” Yurgelun said. “They feel like they’re often the ones teaching their doctors and (primary care providers) about Lynch syndrome and the screening that they need. We wanted to formalize what we do here saying that we are trying to make ourselves a place where patients and families can come to get expert multidisciplinary care.” 

Although researchers have known about Lynch syndrome since the early 1990s when some of the genes were discovered, Yurgelun said there is still a lot they don’t know that they hope to learn through clinical trials. A current trial at Dana-Farber is examining how and if to screen men with Lynch syndrome for prostate cancer. Another study that looked at naproxin as a way to prevent Lynch syndrome-related cancers. Looking to the future, they are excited to study treatments for these cancers using the immune system, Yurgelun said.

As of now, the center’s experts and resources are available to patients who are being treated at Dana-Farber. However, Yurgelun explained, they would be happy to grow the center. “People might come in from further away for a consultation, but it may not be realistic for them to come in in-person yearly to Boston. Part of what we are able to do for them is see them and put together a management and treatment plan that they then execute closer to home and maybe check in with us on more of a periodic basis rather than an annual basis.”
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