Dana-Farber Cancer Institute recently announced the opening of the first Lynch Syndrome Center dedicated to providing genetic counseling and testing for those at risk for the syndrome and delivering a new model of coordinated care for those living with the disease.
A common and underdiagnosed genetic condition, Lynch syndrome increases the lifetime risk of colorectal cancer by up to 80%; endometrial cancer by up to 60%; and significantly elevates the risk of ovarian, stomach, and other cancers. In the United States, an estimated 1 in 300 people carries one of the five Lynch syndrome mutations, but most carriers are either undiagnosed or are diagnosed after they have developed cancer.
Sapna Syngal, MD, MPH
“One of our big missions is to raise awareness,” said Sapna Syngal, MD, MPH, Founder of the new Lynch Syndrome Center at Dana-Farber. “We don’t want people walking around with an increased risk of cancer and not know. We need to get them in the doors for genetic counseling and testing; if they are found to have a mutation, we can provide the specialized, comprehensive care they need to help prevent cancer—including new options as they arise.”
Assessment and Management Steps
One of the first indications that someone may be at risk for Lynch syndrome is a personal or family history of colorectal or uterine cancer. An evaluation at Dana-Farber’s Lynch Syndrome Center would begin with a cancer risk assessment, in which patients meet with a genetic counselor and a doctor who specializes in inherited cancers. If genetic testing is recommended, a blood or saliva sample will be sent to a lab for analysis of the Lynch syndrome genes as well as other cancer susceptibility genes.
For those diagnosed with Lynch syndrome, specialists at the Lynch Syndrome Center would create personalized management plans for patients and ensure careful monitoring and management of the disease. Patients with Lynch syndrome can be offered earlier and more frequent cancer screening and surveillance, as well as preventive surgery, which may dramatically reduce their likelihood of developing cancer. Additionally, the Lynch Syndrome Center will be a resource for family members of those who are diagnosed with the disease.
By offering clinical trials to patients with Lynch syndrome, 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 working with colleagues nationwide on initiatives such as specialized pancreatic and prostate cancer screenings for individuals with Lynch syndrome. ■