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Your Healthy Family: The on-going cancer risk of Lynch Syndrome

Posted at 11:45 AM, Feb 22, 2023
and last updated 2023-02-22 13:45:28-05

Disclaimer: This is sponsored content. All opinions and views are of UCHealth and does not reflect the same of KOAA.

In this Your Healthy Family, I recently had a chance to meet a UCHealth employee who has a special connection with the patients and families she interacts with as part of her job as a medical assistant.

Kelliegh Starr is a scheduler with the Infusion and Oncology department at UCHealth Memorial Hospital North.

Kelliegh tells me, “Just knowing that I'm in the right field, especially working in oncology and infusion - it feels like I'm where I'm supposed to be at this moment of my life. Being there for other patients when they're scared. Just letting them know things like, ‘Hey you got this, just keep on going. You're doing great.’ Really just letting them know once they get into a routine, things won’t feel as overwhelming.”

Kelliegh says she can often recognize a patient's concerns because they are concerns she’s had herself. Her cancer journey began in 2019 when she had genetic testing for the BRCA gene because of a family history of breast cancer. She was 35. The genetic counselor told her they would call if they found anything, so when she got a call two weeks later, she was surprised with the news that while she didn’t have the BRCA gene, she did have something else: Lynch syndrome,

“Lynch syndrome is a genetic condition which increases the risk of colon cancer and endometrial cancer and all different kinds of other cancers,” she said.

According to the National Cancer Institute, as the cost of genetic testing decreases and more people get tested for hereditary cancer syndromes, researchers are learning that Lynch syndrome is more common than once thought. It is currently estimated that 1 in every 280 Americans has the disorder, which translates to about 1.1 million people.

Kelliegh had never heard of Lynch syndrome, so even a basic definition left her with lots of questions.

“It was so much information at one time. They tell you don't ever Google (medical conditions alone) and I Googled. It was just so overwhelming and anxiety set in.”

Once she was able to map out a plan of attack by meeting with various specialists and beginning various cancer screenings, she was less overwhelmed. One of the first specialists she met with was a G.I. doctor for a colonoscopy. Her first colonoscopy in 2019 was clear, but her second in 2020 when she was 36 years old was not. At the time, Kelliegh’s oldest daughter was 7 years old and she had just given birth to a second daughter.

“My youngest daughter was 3 months old when I was diagnosed with colon cancer. It was so scary because here I am looking at a 3-month-old baby and my 7-year-old and I'm like, ‘OK, what's going to happen? I don't know what stage I'm in, I don't know if it has metastasized. I don't know any of those answers yet.’ I just went into the planning of, ‘What do I need to do to make sure that my children are taken care of to the fullest?’ That's a scary spot to be in as a parent and my girls are everything to me. They're my life, yeah - I love those little girls.”

Kelliegh tells me now, even to this day she follows doctors' recommendations to the letter.

“If they told me, ‘You need to cut off a leg to be here’, then OK - take it off. I will do whatever I have to do to be here for my children.”

Kelliegh had her colon removed following her cancer diagnosis. Six months later she had a total hysterectomy followed by a double mastectomy. She tells me, “My last surgery was in June of 2022 and I was officially cancer-free. Everything came back fine, and now I have to see a lot of specialists on a yearly basis, and I have blood work done every six months just to make sure that I stay ahead of it - because I am predisposed (to cancer) and it is genetic.”

Several cancer survivors I have interviewed or know have told me that dealing with the disease can change their perspective on life. In Kelliegh’s case, because of Lynch syndrome, she will never be able to fully put cancer out of her mind.

“It has really changed my perspective on life. Realizing that the little things that used to bother me are nothing because life can change in an instant. I have learned that it’s about being grateful for what I have and being more positive than I used to be. I used to get upset about something so small - and now it's like nothing. It's just water off a duck's back.”

The way Kelliegh approaches her health now is a road map for all of us when it comes to cancer screenings and annual physicals. She says, “It's about being proactive, listening to your body, and doing all of the tests. Do all the necessary testing that you need to do and listen to your body. Nobody likes colonoscopies, it’s not fun but it really can save your life.” She urges women to get their mammograms, too,.

Kelliegh says she has a lot more life to live. “I plan on being here for a very long time, raising my girls and being here for my children.”

On February 24th, UCHealth will hold a night of hockey and inspiration as they partner with the Colorado Avalanche to extend the NHL's Hockey Fights Cancer initiative. Hockey Fights Cancer is a league-wide effort aimed at raising awareness and funds for cancer research. UCHealth invited patients and oncology staff from southern Colorado to gather at the U.S. Olympic & Paralympic Museum to enjoy the venue, explore the interactive museum and then settle in for the main event – a watch party of the Colorado Avalanche vs. Winnipeg Jets game.

Kelliegh is one of the invited guests, and she is looking forward to the camaraderie. “I haven't ever watched a hockey game and so I'm really excited about taking my girls (to the watch party) and being there around my coworkers and friends and being able to support one another. A lot of people don't know what I've gone through. So, I'm really excited about going to this watch party and being there around other people and listening to their stories. The support group that I go to is awesome because when you talk to other people that actually know how you feel, it is just the best feeling. You realize that you're really not alone and for me, that was huge. Because there are times when you're like, ‘How do I explain this to somebody that's never been diagnosed?’ So to be around people that understand - it takes a whole lot off of your plate and it's a huge relief.”

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