‘Previvor’: 11 News employee shares her battle with Lynch syndrome, urges others to know their risk

COLORADO SPRINGS, Colo. (KKTV) - This week marked Lynch Syndrome Awareness Day, a hereditary disorder that can cause an increased predisposition to certain cancers, and at a younger age.

Doctors say it’s a fairly common disorder, yet not only are many Americans unaware of the condition, they are unaware of their own familial risk.

A member of of our 11 News family has been living in the shadow of the disorder for the last decade. She was recently willing to talk with one of our reporters about her experience.

“Back in 2013, they found the Lynch syndrome gene in my grandma,” Kelsie said. “If one of your parents has it, you have a 50 percent chance of having it. So, then it was like, ‘So she has it, so that means all her kids have to get tested,’ so they got tested. My dad ended up having it. So then, me and my siblings all had to be tested, and sure enough we found out that I have it.”

Kelsie started at KKTV as an editor and videographer in 2014. She has spent the entirety of her career living with the diagnosis.

“There’s a certain number of cancers specifically with Lynch syndrome that you have a high chance of, and, with Lynch Syndrome specifically, colon cancer is the strongest cancer in that risk. Because of this diagnosis, I know every year to go in and get tested for, I get colonoscopies every year which wasn’t fun but they’re honestly saving my life because the last four years I have been precancerous.

“Because of this diagnosis, I know every year to go in and get tested for, I get colonoscopies every year which wasn’t fun but they’re honestly saving my life because the last four years I have been precancerous. If I didn’t know about my Lynch Syndrome diagnosis, I wouldn’t know to go and get these colonoscopies, and I wouldn’t have gone and found out that I did actually have precancerous polyps, and I would have cancer today if they didn’t find them and remove them right away.”

She calls herself a “previvor.”

“I really like that term a lot, because there are those of us with Lynch syndrome who have had cancer. I am one of the few that have been blessed never to get cancer yet. I’m one of the lucky ones that has not had cancer, but I live life all the time like it’s coming. So, I’m constantly going and getting these tests done, I’m going and seeing a doctor all the time, I don’t live quite the normal life you would expect.

“We’re not survivors because we haven’t technically gone through it, so we’re “previvors” because we’re doing all the steps before to prevent ourselves from becoming a survivor.”

One of the most difficult decisions Kelsie has had to make was the decision to get a partial hysterectomy a few years ago.

“A lot of women will actually go in and [doctors] suggest kind of around the age of 35 to go and get a hysterectomy or a partial hysterectomy, because those cancers are on the list and, so, that’s one way to prevent that cancer is to go in and get that surgery. With the Lynch Syndrome, that was something that doctors were like, ‘You can wait until you’re 35, but after 35 your percentages go up,’ and so they were like, ‘We really want you by the age of 35 to get that surgery done.’

“It’s kind of one of those trade offs, it’s like, do I keep it so that I can maybe have the kids that I’ve always wanted to have, or do I play it safe and pick my health first? And, so, that can be a really tough and emotional choice for a lot of women with Lynch syndrome that know that this is coming.

“I felt like I had this clock basically ticking that was running out of time. And unfortunately, I ran out of time. So, that was really hard.”

Kelsie was willing to share this personal story to help others better understand what Lynch Syndrome is and whether there is the potential for that gene to be lurking in their own family.

“Very few people who gave Lynch syndrome know they have it, and if they know they have it they can get those tests done to potentially save their lives.”

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As part of Lynch Syndrome Awareness Day, 11 News anchor Katie Pelton also spoke with a doctor about the disorder.

Katie Pelton: What is Lynch syndrome?

Dr. Swati Patel: “Lynch syndrome is an inherited genetic condition that significantly increases the risk of multiple cancers, including colon cancer, rectal cancer, uterine cancer, ovarian cancer, pancreatic cancer -- the list goes on.

“The reason is because this inherited genetic change is a mistake in one of five genes that is responsible for fixing mistakes. As you can imagine, if you’ve inherited a predisposition for not being able to fix mistakes, cells can grow abnormally, move abnormally and that can predispose to tumor or cancer form.

“It’s quite common, it actually effects one in 279 individuals, but unfortunately, less than 10 percent of Americans who have Lynch syndrome are even aware of their diagnosis.”

Pelton: Why should we know/care about it?

Patel: “It’s really important, because this genetic diagnosis is not a foregone conclusion that a patient will develop any one of these cancers that I mentioned. Even though the cancer risks are higher than the general population, we have very effective interventions that can decrease cancer risks. Often times, finding cancers at early stages where they’re curable, if not preventing them all together. This includes a host of medical care, including preventative procedures, including colonoscopy or upper endoscopy, where we can find things before they turn into cancer, but also medications that have been proven to decrease cancer in Lynch syndrome, dietary changes, and risk-reduction surgeries we can offer to patients to eliminate the risk of cancer in specific organs.”

Pelton: Who should be checked out for Lynch syndrome?

Patel: “I would say there’s a variety of factors that should raise a red flag for possible Lynch syndrome or hereditary predisposition to cancer. Certainly anyone who has a strong history of cancer on one side of the family, any one of those cancers or multiple cancers are occurring at younger ages than you would expect, because this genetic syndrome in some ways gives patients a head start to cancer, so if you have multiple family members on one side of the family who had different cancers, and particularly diagnosed at a younger age, that should be something to prompt you to talk to your doctor about your family history.

“What’s important to understand is all patients diagnosed with certain cancers, like colorectal, pancreatic, ovarian, uterine, should be screened for Lynch syndrome. So that’s really regardless of family history ... regardless of tumor characteristics. If you’re diagnosed with one of those cancers, your tumor should have been screened for Lynch syndrome, so it’s really important to check with your doctor about whether that was done or not.”

Pelton: What are the next steps to see if you or a family member might have Lynch?

Patel: “Really, there are multiple individuals in the health care system who can partner with you. It can be overwhelming or daunting to think about whether you have a genetic syndrome and if you do have a genetic syndrome, how to best take care of you and your family. I would say the most important partnership initially is with a genetic counselor. If you have Lynch syndrome, it’s really important to partner with the healthcare team that is familiar with lynch syndrome and can offer you all of these risk reduction strategies.

The key is to partner with a genetic counselor who can direct you to a specialist you might need to decrease your cancer risk.”

For more on Lynch syndrome, click here.

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