Lynch Syndrome Center advances early detection and prevention

Susan Ryan

Susan Ryan (front right), her sister (front second from left), mother (front middle), and father (top right) all battled cancer

Following appointments at another medical institution in Boston, Lynch syndrome patient Susan Ryan described herself as "scared, isolated, and alone." But after her first meeting at Dana-Farber with Matthew Yurgelun, MD, she not only found answers to questions she had been asking her entire life, but also the supportive and collaborative medical environment for which she had long been searching.

"My family had a running joke that we have good brains but bad genes," said Susan. It seemed that every member of her family was fated to get cancer—many battled more than one cancer in their lifetimes and nearly all died from the disease. Susan is a three-time cancer survivor herself. Yet, until she arrived at Dana-Farber, no doctor could explain the prevalence of cancer in her family or had thought to recommend her for genetic testing.

In 2016, more than 25 years after her first cancer diagnosis and only months after the first of two surgeries to remove tumors from her colon, Susan was referred to Dr. Yurgelun following irregular pathology on a rare skin tumor during what was supposed to be a routine basal cell removal. At this appointment, Dr. Yurgelun diagnosed Susan with Lynch syndrome and she has seen him on a six-month basis ever since

Susan finds comfort in her regular check-ups, knowing that any signs of cancer growth will be caught early and that Dr. Yurgelun will answer her questions with patience, understanding, facts, figures, and suggestions. For the first time in her life, Susan feels like a partner in her care.

At Dana-Farber’s annual LYNKED IN Lynch syndrome patient conference, Susan found that she was not alone. She is now dedicated to spreading awareness about this genetic syndrome so other families will not wonder if they are "jinxed," but instead will take the proactive steps to prevent cancer, or find it in the earliest stages when treatment is most effective.

Initially overwhelmed by her diagnosis, Susan now feels empowered. She knows she is not in this fight alone.