For patients interested in connecting with other families who are dealing with Lynch syndrome, the Internet can be a valuable tool. In 2009, Linda Bruzzone of Vacaville, California founded Lynch Syndrome International (lynchcancers.com), or LSI, an organization that provides information about risk, links to current research and an online social network for those diagnosed with the syndrome. In June 2014, the organization hosted its first conference in Florida.
Linda founded the organization after she was diagnosed with stage III colon cancer and learned she had Lynch syndrome. She had requested more frequent colonoscopies due to her family history of cancer, but her requests had been denied. After major surgery to remove most of her colon and months of chemotherapy, she is now cancer-free. Her daughter elected for genetic testing and also tested positive for Lynch syndrome, and she opted for a total abdominal hysterectomy to reduce her risk of cancer.
“There is so much hope out there,” Linda says. “Before, people with Lynch syndrome would usually die when they reached a certain age, and sometimes entire families were wiped out. Now I am seeing many people live because we can do the annual screenings. Without those early, frequent screenings, most of us would not be here today.”