- Ashley Teague, now 30, experienced unexplained weight loss, diarrhea, and bloody stool for months.
- She said her doctors refused her colonoscopy requests, since she was young and looked healthy.
- She had colon cancer and Lynch syndrome, a genetic condition that raises the risk of several cancers.
Ashley Teague didn’t know why she started losing weight in spring 2019, and she didn’t really care.
The year prior had been an exceedingly rough one — her close friend died from a heart attack and her uncle was killed in the line of duty — and she’d put on some weight.
Perhaps, Teague thought, the vanishing pounds reflected her improved mental and physical health. Never mind that she was working late nights as a bouncer and hadn’t changed her diet or exercise routine.
“I was like, ‘OK cool,'” said Teague, whose 6-foot-1 frame had grown to about 275 pounds at its heaviest. “I wasn’t even paying attention to like, ‘Hey your schedule is horrible, you barely sleep, you eat like crap.'”
But about a year later, Teague, a freelance photographer and mom of two in Indianapolis, started to worry. She was down 25 pounds, had suffered a severe and unexplained side pain while working a Super Bowl shoot, and everything she ate ran right through her. She had diarrhea up to seven times a day.
“I knew deep down” something was wrong, she said.
But Teague, now 30, said it took six to seven months of advocating for herself at the doctor’s office to be granted a colonoscopy — despite her likely inheritance of Lynch syndrome, a genetic condition linked to a higher risk of multiple cancers, including colorectal cancer.
Once she finally underwent the procedure, Teague learned she had a tumor in her colon the size of a baseball. She shared her story to raise awareness of Lynch syndrome and the rising rates of colon cancer in young people, and to encourage people to speak up for themselves.
“Your body gives you signs before it shuts down,” Teague said, “so listen to it.”
Clinicians first told her she looked healthy and probably had IBS
When Teague first went to the doctor, she said the nurse practitioner dismissed her weight loss, pain, and diarrhea as irritable bowel syndrome and gave her medication. A month later, Teague returned with the same roster of symptoms, along with bloody stool.
But because her blood work came back normal and, the nurse said, she “looked healthy,” her request for colonoscopy was denied. “We do not give colonoscopies to patients under 48 years old,” Teague said the nurse told her.
At subsequent doctor’s visits, Teague said she told the team her mom, a kidney and breast cancer survivor, has Lynch syndrome. Teague had a 50% chance of inheriting the mutation, which leaves women with a 40% to 60% lifetime risk of developing colon cancer, according to MD Anderson Cancer Center.
But clinicians didn’t test her for the condition, she said, and just told her to “lay off spicy food” and change her diet since a CT scan hadn’t detected any problems.
It wasn’t until Teague learned her father had recently had cancerous polyps removed from his colon, and told her doctors that, that she was fast-tracked to a colonoscopy. “Suddenly, everyone was scrambling, ‘We’ve got to get you scheduled, we’ve got to get you scheduled,” Teague said.
When she learned the December 2020 procedure had indeed revealed cancer, Teague said, “I remember my world just stopped. I didn’t hear anything, it was just silent and cold.”
Teague learned she had Lynch syndrome, which had a silver lining
Teague underwent surgery to remove more than 4 and a half feet of her five-foot colon and merge what was left with her small intestine.
The surgeon also recommended genetic screening for Lynch syndrome, which Teague learned she has. Estimates suggest about 1 in 300 people worldwide have the condition, but it’s likely “woefully underdiagnosed,” Dr. Matthew Yurgelun, director of the Lynch Syndrome Center at Dana-Farber Cancer Institute, told Insider.
For people with Lynch syndrome, he said, “there is a wealth of tools available that can be extremely effective at reducing cancer, but we need to know that that added risk exists in the first place.”
According to Yale Medicine, people who know they have Lynch syndrome typically begin colon cancer screenings in their 20s and repeat them every year or two.
If Teague had been tested six years earlier when her mom was diagnosed, she thinks doctors would have caught the cancer earlier and more, if not all, of her colon could have been spared. Without it, she can only stomach a meal or two a day, she has to use the bathroom frequently, and mostly only has loose stools. But, she said, “I’ll take that over having to change a colostomy bag any day.”
Teague’s also grateful, in a way, that she has Lynch syndrome since cancers that develop from it tend to be diagnosed in earlier stages — even if the patient doesn’t know they have Lynch syndrome, Yurgelun said.
Before operating, Teague’s surgeon thought it was stage 4 cancer due to the size of the tumor. But Teague said she later learned it was stage 2.
“Something that should have killed me didn’t because I have Lynch syndrome,” Teague said, adding that doctors told her she’d been living with the cancer for over a year.
Now, Teague, who has a GoFundMe page to support her medical expenses, is considering a hysterectomy since she’s also at high risk of uterine cancers. But first, she has to decide if she wants more kids. Her girls are now 10 and 6, and will be tested for Lynch when they turn 18. “If they have it, we’ll start setting up the preventive screenings,” she said. “If not, they’re good to go.”
Bowel cancers are on the rise in young people
In the past three decades, research has consistently found rising rates of colon cancer and related illnesses like rectal cancer among younger people.
People older than 50 are still at a greater risk of developing colon cancer overall. However, people under 50 are more often diagnosed with hard-to-treat, advanced forms of the disease.
Bowel cancers can be difficult to diagnose because the symptoms — such as abdominal pain, constipation, diarrhea, weight loss, and fatigue — are common with ailments like hemorrhoids, inflammatory bowel disease, or irritable bowel syndrome.
“It is very clear that signs and symptoms that might indicate colorectal cancer in those under 50, and particularly rectal bleeding, should be evaluated by a healthcare professional promptly and not dismissed as ‘only hemorrhoids’ or ‘normal,'” Dr. David Greenwald, a professor of medicine and gastroenterology at the Icahn School of Medicine at Mount Sinai, previously told Insider.
If caught early, colon cancer is very treatable, and the five-year relative survival rate is about 90% if the cancer doesn’t spread, according to the American Cancer Society.
“I have so many ideas and plans I want to get to advocating, I feel a little discouraged in this big old world, will my voice really be the one?” Teague said. “But someone needs to” encourage clinicians to take family history, medical history, and symptoms into account, and not just dismiss patients due to their age, she said.
Getting screened, Teague said, at the least can give people “peace of mind.”