In March 2016, two months before joining Dana-Farber, Sara Menendez, LAT, ATC, attended LYNKED IN, an annual one-day conference hosted by Dana-Farber’s Lynch Syndrome Center. The event gave her an opportunity to meet colleagues and learn about treatment advances, screening guidelines, and prevention efforts for Lynch syndrome, an inherited and often underdiagnosed condition that increases the risk of certain cancers.
In April 2024, Menendez learned about Lynch syndrome again, but this time as a patient.
“My genetic counselor shared my diagnosis, and I remember feeling an immediate sense of overwhelm and uncertainty,” recalls Menendez, a practice manager of the Leonard P. Zakim Center for Integrative Therapies and Healthy Living at Dana-Farber. “My mind jumped to several unfounded conclusions and ‘what ifs.’ What if I have cancer right now? How am I going to manage the appointments and screenings? What do I need to do first?’”
While much of that day is a blur, Menendez recalls one key phrase from her genetic counselor: “She said, ‘Knowledge is power,’ which brought me back from the flurry of worrying thoughts,” she remembers. “Knowing I have an increased risk of certain cancers means I have the power to take action through surveillance and prevention.”
About one in 279 people have Lynch syndrome in the United States, which is caused by an inherited mutation in one of five genes. The most common cancers associated with Lynch syndrome are colorectal and uterine. Others include ovarian, urinary tract, stomach, small intestine, pancreatic, and biliary tract cancers, as well as rare skin tumors known as sebaceous adenomas and carcinomas.
“The average age for several Lynch syndrome cancers is in the mid-40s, but some can occur much earlier in adulthood,” explains Matthew B. Yurgelun, MD, director of the Lynch Syndrome Center at Dana-Farber. “Many screenings start when people are in their 20s and 30s. With early detection and screening, many of these cancers can be caught and treated early or, in many cases, prevented.”
The Lynch Syndrome Center is the largest and most comprehensive multidisciplinary cancer genetics group in the region to specialize in Lynch-related care coordination and treatment. The center provides personalized, comprehensive care for families with Lynch syndrome, supported by exceptional research, state-of-the-art diagnostics, and preventive screenings.
Menendez, who met with Yurgelun after her diagnosis, felt well informed thanks to LYNKED IN years earlier, but she still felt uneasy and overwhelmed about how to manage her care, particularly all the preventive screenings. Most patients with Lynch syndrome undergo yearly colonoscopies, skin cancer checks, and upper endoscopies. Those assigned female at birth also have gynecological imaging and biopsies or risk-reducing surgery. Additional screenings are recommended based on a patient’s family and personal history. Staff at the Lynch Syndrome Center also share patients’ care plans with their primary care providers to facilitate coordinated care, referrals, and scheduling.
“Dr. Yurgelun met me where I was and was honest about the implications my diagnosis could have in the future,” shares Menendez, who remains cancer-free. “Regardless of being a staff member, that’s why I chose Dana-Farber – the coordination of my care is handled and documented for me. If I develop cancer, it’s likely to be caught early, and to me, that makes all the appointments and screenings worth it.”
Beyond a sense of empowerment, Menendez’s Lynch syndrome diagnosis has also had a positive impact on her career. “My diagnosis has allowed me to access a deeper sense of compassion for the patients I interact with at the Zakim Center,” she explains. “It has reinforced Dana-Farber’s values and encouraged me to help my team strengthen their already outstanding customer service by seeing the bigger picture. We don’t know the extent of what a patient may be going through, but we can do everything in our power to be a bright spot in their day.”