‘We call ourselves ‘previvors’‘: Lynch Syndrome testing can help save lives

COLORADO SPRINGS, Colo. (KKTV) - Saturday is Lynch Syndrome Awareness Day. A relatively common condition, that not many people might know about. A G.I. prevention doctor told 11 News that Lynch Syndrome is underdiagnosed, and doesn’t get the attention it truly needs. Most people don’t know they have this inherited genetic condition until they get cancer.

“Individuals inherit a copy of that mismatch repair gene that doesn’t work,” Dr. Swati Patel, an Associate Professor of Medicine at the University of Colorado, explains. “You can see how inheriting this can increase or predispose patients to cells growing abnormally because mistakes don’t get fixed. Those cells can then kind of turn into pre-cancerous things that can over time turn into cancer.”

One in 279 individuals are diagnosed with Lynch Syndrome. There are no symptoms to alert you of something wrong. It all goes back to one’s family history. If your parent has Lynch Syndrome, there’s a 50% chance you have of getting it. That’s why it’s important to look for red flags within your family’s history, to see if you should get tested for a diagnosis.

“Those three red flags, young onset cancer, multiple cancers, clustering on one side of the family, multiplicity of cancers within a single individual,” Dr. Patel said. “If any of those raise your eyebrow, but there’s not a strong family history, don’t dismiss that uneasiness. If there’s young onset cancer, even if there’s no family history, people should be talking to their doctors about the possibility of some hereditary predisposition.”

Our 11 News Video Journalist, Kelsie Ingram, was diagnosed with Lynch Syndrome. She said getting tested, saved her life.

“We call ourselves ‘previvors’ because even though we haven’t had cancer, we’re acting as if we are kind of sick,” Kelsie Ingram explained. “In essence, we’re eating different things that we need to eat. We’re doing the testing and the screening to find out if we have cancer and doing surgeries to help prevent these cancers... They found it in my grandma and then they found it in my father, so me and my siblings all got tested and a couple of us did have Lynch Syndrome. Now those of us with it are testing and screening. The ones who didn’t end up having it are clear they won’t pass it on to their children.”

Kelsie told 11 News, that multiple relatives of hers, didn’t get testing soon enough and ended up with colon cancer. She wants the condition to be more spoken about more, so people can get tested. She says it can be a scary diagnosis, but once you’re aware you can protect yourself.

“I always kind of joke with my husband that I’m probably going to outlive him because unlike him who just does his typical yearly doctor visits, I’m constantly being screened and looked at and I’m always chatting with my doctors,” Ingram said. “I’m very aware of what’s happening inside my body, so if something’s going to happen, I’m going to catch it so early. I’m going to be so on top of it and I’m going to be able to kick it out real fast... I’ve done some of the other preventive care in the major surgery and in some of that screening I was pre-cancerous, so it was in a colonoscopy. They were able to find those pre-cancerous polyps and they’re able to remove them before they could truly develop into cancer. If I hadn’t known about this diagnosis, if I hadn’t been getting that screening, I would have cancer today and it would’ve been too late to prevent.”