Living with Lynch Syndrome: One Woman’s Story

Kerry Evers was always concerned that, due to a family history of the disease, cancer could be in her future. Her grandmother, father, uncle, and several of her cousins had been treated for different cancers throughout the course of her life. But Evers’ clearest indication of her chances of developing cancer resulted from learning her family had a lesser known genetic predisposition to cancer called Lynch syndrome.

A common and underdiagnosed inherited genetic condition, Lynch syndrome increases one’s risk for a variety of cancers, including colon, rectal, uterine, ovarian, urinary tract, and others. Individuals with a mutation in one of five known Lynch syndrome genes are carriers of the disease. When Evers’ cousin with colon cancer learned he had inherited a mutation in one of these genes (MLH1), he recommended everyone in the family undergo genetic testing.

After testing, Evers confirmed that she too had the MLH1 gene mutation. Medical professionals near her Rhode Island home knew little about Lynch syndrome, so she was referred to specialists at Dana-Farber well-versed in the condition.

A decade later, Evers still does not have cancer—but thanks to ongoing care from her team, now situated within the new Lynch Syndrome Center at Dana-Farber, she has peace of mind. She understands her situation, and her options.

Kerry Evers (right) with her mother, Marybeth.
Kerry Evers (right) with her mother, Marybeth.

“When I started coming here we went over my genetic testing, discussed my family history, and formed a plan of action for me specifically,” says Evers, 47. “At the time I was still of childbearing age and there were a lot of concerns. Since then, I have been having all my scans and scopes done here at Dana-Farber, and they coordinate my care with my physicians in Rhode Island.”

As part of Dana-Farber’s Division of Cancer Genetics and Prevention, the Lynch Syndrome Center is the first comprehensive, multidisciplinary center dedicated specifically to the evaluation and care of Lynch syndrome patients. Center physicians provide personalized, comprehensive preventive care for families, supported by robust research and diagnostics.

Sapna Syngal, MD, MPH, founder of the Lynch Syndrome Center, has been treating Evers for close to a decade. She says this personalized, long-term care for individuals and families will be a major focus of the Center, along with educating the public about cancer risk associated with Lynch syndrome. About one million people in the United States (or 1 in 300) have the disorder, and most have never heard of it.

“One of our big missions is to raise awareness,” says Syngal. “We don’t want people walking around with a risk for a cancer that can be prevented, and not know it. We need to get them in the doors for genetic evaluation and testing, and if they are found to carry a mutation, we can give them the specialized, comprehensive care they need—including new options as they arise.”

By offering clinical trials to Lynch syndrome patients, the center also hopes to learn more about the five Lynch syndrome genes and other potential genetic causes. Using research findings from hundreds of families, Dana-Farber physician-scientists are already working with colleagues nationwide on initiatives including specialized pancreatic and prostate cancer screenings for individuals with Lynch syndrome.

 “As we pull in pieces of an individual family’s own specific history, we can use that information to guide future prevention or risk reduction for the cancer-free individuals in the family,” says Matt Yurgelun, MD, director of the Lynch Syndrome Center. “We’re also learning more and more about how Lynch syndrome cancers biologically may be inherently different from non-Lynch syndrome cancers. Research is how we get better, and smarter, and that will lead to better screening and prevention in the next generation.”

In the meantime, Lynch syndrome patients like Evers will continue finding comfort—and community—at the center.

“Having Lynch can be incredibly overwhelming, but having an entire center that’s focused on the latest research and current care guidelines is important,” says Evers. “Being able to contact one person, who is then going to connect you with the right resources, and the right information, at the right time, is a real help when you’re managing something like this.”