Girl Diagnosed At 14 After Symptoms Dismissed

Beginning in sixth grade, Liberty “Libby” Ashworth began feeling sick frequently, losing her appetite, and suffering from back pain.

“I got really constipated,” Libby, now 18, of Panola, Iowa, told TODAY.com. “Something was definitely going on in my stomach.”

During her freshman year of college, Libby noticed blood in her stool. She and her parents knew something was seriously wrong. They visited multiple doctors to try to understand her condition, but they dismissed her.

“They actually said it was normal for teenage girls to have blood in their stool,” she says, “and my mom was really unhappy about it, so we decided to see a different doctor.”

After experiencing severe, sharp abdominal pains and being rushed to hospital, Libby received a devastating diagnosis: the then 14-year-old had stage four colon cancer.

“It was really frustrating,” Libby’s father, Tim Ashworth, 52, told TODAY.com. “They just thought we were taking her to the doctor too many times. We kept saying there was something wrong with her.”

Libby dances competitively, and when she first experienced back pain she thought it was due to her rigorous training and performance schedule, but she also had other worrying symptoms that didn’t seem related to dancing.

“I was feeling sick,” she said, “and I had no appetite, so I actually went to get an allergy test.”

Tests didn’t reveal any underlying causes, and doctors assured Libby she’d be fine. But when she began her freshman year of high school in 2020, “everything got worse,” she says.

Libby regularly experienced “severe stomach upset and high fevers” and doctors frequently tested her for COVID-19, which always came back negative. Then she developed the alarming symptom of bloody stools, but doctors ignored it, deciding that the symptoms and pain were unrelated to the fact that she was a woman and a dancer.

At one point, doctors even suggested her health problems were psychosomatic.

“It was so painful to be told it was all in your head by medical professionals who were supposed to be in charge of your life, it broke my heart,” she says. “They actually referred me to a psychiatrist.”

Her parents disagreed and continued to urge her for a colonoscopy.

“Her mother finally called and demanded that something be done, and the new doctor said, ‘Well, we need to get her in for a colonoscopy,'” says Tim Ashworth. “He finally wrote a referral.”

But before she could undergo the colonoscopy, Libby experienced severe abdominal pain.

“I thought I was going to get my period, but it just got worse and worse,” she said.

Libby took baths to try to ease the pain, but it didn’t help. Her father is a paramedic. I tested her for appendicitis.But that didn’t seem to matter.

“I was screaming and crying. I couldn’t walk or stand,” she said. “It was awful.”

Her family took her to the nearest emergency room, where doctors performed a CT scan.

“The doctors said, ‘Oh, you have something in your stomach,’ but they didn’t know what it was,” Libby recalled. “They did an MRI and found a tumor the size of a grapefruit.”

The tumor was pressing against her spine, causing two bulging discs and part of the reason for her back pain. The local hospital transferred Libby to a hospital in Des Moines, Iowa. On November 10, 2020, the family finally learned why Libby was sick.

“I was diagnosed with colon cancer,” she says. “It was really scary.”

Libby underwent surgery in December 2020 to remove half of her colon, the tumor, and one of her ovaries in order to preserve her fertility. Doctors diagnosed her with stage 4 colon cancer. She immediately began chemotherapy at UnityPoint Health Blank Children’s Hospital, to which she often experienced poor reactions.

Libby’s mother, Jennifer Jensen, attended a cancer support group to learn more about cancer. Colorectal Cancer in Teens and Young AdultsShe was an advocate for her daughter and urged doctors to test Libby. Lynch syndromeLibby tested positive for Lynch syndrome, a genetic condition that increases a person’s chances of developing several types of cancer, including colorectal, uterine and liver cancer, even though neither of her parents carried the mutation.

In February 2021, doctors discovered Libby had a blockage caused by a tumor — known as a small intestine obstruction — and she was eventually transferred to Mayo Clinic where she underwent “really major surgery,” she recalled.

“[I]had the rest of my colon removed and had an ileostomy,” Libby explains.

Libby began immunotherapy treatment because it works against the colon cancer caused by Lynch syndrome, one of her doctors, Dr. Samantha Mallory, told TODAY.com.

“I did the immunotherapy for about two years and it was incredibly effective,” Libby said. “I was so happy. My hair started growing back.”

Libby showed no signs of the disease for two years, but when she was 17, a scan showed the cancer had returned and she had to start chemotherapy again, during which time she became seriously ill.

Jensen did some research and suspected her daughter had dihydropyridine dehydrogenase (DPD) deficiency. The enzyme DPD helps the liver process chemotherapy. Colon Cancer AlliancePeople with DPD deficiency cannot break down the drug, which builds up to dangerous levels in the body. Jensen tried to get doctors to test Libby, but Ashworth said it took a lot of convincing.

“Whenever Jen would bring something up, they’d say, ‘Well,[Libby]can’t have that, it’s so unusual,'” Tim Ashworth recalled. “She would push through until Libby got tested, and then it was always like that.”

Eventually, Libby learned she had a DPD deficiency and “the chemotherapy drugs were staying in her system,” she says.

“It’s really terrible Hand and foot disorders“My hair fell out within a day. My legs hurt. My legs hurt so much I couldn’t walk. I had scars from my mouth to my ileostomy,” Libby said. “It was so toxic that it eventually killed me.”

Doctors were able to cut Libby’s chemotherapy dose in half, which lessened her side effects, and her family was hopeful that new treatments would be developed to help her in the future.

In May 2024, the doctor Published research The numbers were sobering: Colon cancer rates among teenagers have risen dramatically, more than tripling in the past 20 years.

That sounds scary, but experts say colon cancer in teenagers is still very rare.

“We went from one in a million to three, so that’s a 300% increase, but it’s still a very small number,” Dr. Christina Annunziata, senior vice president of external discovery science at the American Cancer Society, told TODAY.com. “It’s rare, but it’s not zero.”

Annunziata said doctors should consider a diagnosis if a teenager “shows signs of colon cancer.” Symptoms of colon cancer include:

• Blood in stool
• Stomach pain
• Occasional abdominal pain
• Intestinal changes
• Unexpected weight loss

Mallory, a pediatric hematologist and oncologist at Blank Children’s Hospital who treated Libby, said that as colon cancer rates rise in young adults, so do they in teenagers. Experts believe poor diet and sedentary lifestyle choices are linked to colon cancer developing at a younger age in adults, and they suspect these factors may also be affecting teenagers. Genetic conditions also play a role in colon cancer development in teens and young adults.

“In Libby’s case, she has a genetic syndrome that causes her condition,” Mallory explains. “In fact, it’s becoming more common.”

Still, Mallory agreed that colon cancer is rare in teenagers, adding, “It’s not common at all in pediatrics.”

Mallory and her colleagues worked closely with an adult oncologist to address Libby’s cancer.

“We designed a treatment plan based on what an adult would normally receive,” Mallory said. “She started with the usual chemotherapy. … She also had to have surgery to remove a large tumor that was causing the bleeding.”

After genetic testing showed she had Lynch syndrome, doctors decided to switch Libby to immunotherapy, “to harness her own immune system to attack the cancer,” Mallory explains. Libby is currently in a clinical trial, which, if successful, may prevent her from needing further treatment for her colon cancer.

However, because of Lynch syndrome, Libby will need to be closely monitored at all times.

“She’s predisposed to all kinds of cancers, so she’ll need to be monitored for the rest of her life to watch for all other types of cancer,” Mallory said.

Despite all the challenges Libby has faced, she has maintained a positive attitude.

“She’s amazing,” Mallory said. “No matter what, she’s still a teenager. We spent two-thirds of our conversation talking about teenage things and how[cancer]is getting in the way of what she wants to do.”

The lesson for parents is Stomach ache Although childhood cancer is common, “childhood cancer is rare,” Mallory said.

Still, she encourages parents to follow their own instincts when it comes to their children’s health.

“If symptoms don’t subside and you’ve seen multiple doctors, encourage them to seek further testing,” Mallory said.

When Libby turned 18, Clinical TrialsShe said the company will use CRISPR technology to create personalized treatments to “attack cancer inside the body.” CRISPR allows scientists to “selectively modify” DNA, she said. National Human Genome Research Institute.

“The ultimate goal is to cure (her cancer),” Dr. Tim Ashworth said. “It’s very new, so we don’t know yet (if it will work).”

Libby continued to dance during the four years she battled cancer and believes her experience can help others. When she meets children with cancer, she tries to encourage and support them.

“I always try to find the bright side,” she says. “Sometimes it’s really hard.”

Support from her family, church and community helped, but friendships were sometimes hard to maintain. Still, Libby is grateful for all the people who were there for her.

“It’s nice to know I’m not fighting this alone, and that no matter what, God has a plan for me,” she says. “I can help someone else in the future.”

Libby enjoys dancing on her university team and spending time with her family. Although her ileostomy pouch allows her to do most things, including dancing, it can be a hassle.

“When I’m changing my pouch, it won’t stay in, it leaks, it tears, and I sit there and cry,” she says. “I get upset over the smallest of things, and that’s when I feel depressed, but then I come back to reality, I change my pouch, and I realise everything is going to be fine.”

Her father says it’s hard to watch Libby face so many hardships.

“No one wants to see their child go through anything more than they went through,” he said. “She inspires me, too, because I see her fight and she has a smile on her face.”

Libby hopes she can show others how to embrace life in the face of adversity.

“I don’t think I would be where I am today without cancer,” she says. “I live every day like it’s my last. You never know what’s going to happen. You have to look on the bright side.”