Colon cancer wasn’t on Carly Barrett’s radar when she suddenly developed an upset stomach at the age of 24.
She had no family history of the disease and no other health problems.
A serious illness seemed impossible for a young teacher who started her career, traveling with friends and enjoying life with her husband-to-be.
Still, those persistent symptoms worried Barrett. She noticed blood in her stool, had abdominal pain, lost weight and felt a mass in her abdomen. When she looked up those warning signs online, she thought they were caused by hemorrhoids, ulcerative colitis, irritable bowel syndrome, or Crohn’s disease.
When Barrett mentioned the problems to her gynecologist, the doctor told her they were definitely not normal and urged her to see a gastroenterologist.
That GI specialist’s office had scheduled an appointment with her six months later, which Barrett took as a sign that her symptoms couldn’t be so worrisome. Colon cancer was the last thing on her mind.
“I was like, I’m 24. I’m too young. Cancer doesn’t happen to people at this age. Cancer doesn’t happen in people who don’t have it in their families,” Barrett, now 28 and a fourth grade teacher in Louisville, Kentucky, tells TODAY.com.
“But it is, and colon cancer is no longer an (older) disease.”
‘In a state of shock’
Barrett’s diagnosis in June 2019 came before she ever made it to that GI appointment and as her symptoms continued to get worse.
She was returning from a vacation in Europe when she felt “indescribable pain” in her stomach during the flight from Spain to the US. At home.
A CT scan and biopsy revealed stage 3 colon cancer.
“You’re in a state of shock and my next thought was just, okay, what are the next steps? What treatment options do I have?” she remembers thinking.
Barrett underwent exploratory surgery in which doctors removed a large tumor and 2 feet of her intestine, she says. She had to get used to life with a stoma bag.
One of her ovaries was also removed because the tumor was pushing against it. A month later — before she began chemotherapy that could lead to early menopause — Barrett underwent an egg removal process using the only remaining ovary to give her a chance to have children.
That first chemotherapy failed, with the colon cancer metastasizing to her liver. She was now in stage 4.
The next chemotherapy drug just kept her stable, which her doctor didn’t like. He wanted the cancer to shrink and recommended that immunotherapy be investigated. Barrett and her family sought advice from prominent institutions, but were initially discouraged.
An oncologist told her that “Immunotherapy wasn’t going to work for me, and I should just go home and get comfortable,” she recalls. The family did not accept that scenario and continued to look for options.
Cancer shrinks with immunotherapy
Finally, a doctor at Vanderbilt University urged Barrett to participate in a clinical trial for the immunotherapy drug atezolizumab, also known as Tecentriq, which she joined in February 2020. She qualified because she has a tumor marker called PD-L1 that is likely to respond to treatment.
It did just that, with Barrett’s cancer finally shrinking. Today she says she is in a state of remission and has no signs of illness. She opened her story on TikTok to show other colon cancer patients that there are success stories.
Doctors have never given her “any expiration date,” she says — the hope is that the cancer never returns, though the long-term prognosis is unknown. She undergoes scans every four months to check for any recurrence.
Barrett married in April 2022. A month later, she underwent an ostomy reversal and no longer has to live with an ostomy bag.
“Physically, I can function normally,” says Barrett.
“Mentally, I’m still trying to get back to normal, but I don’t think I ever will. I’m starting to get used to this new normal.”
Doctors have been unable to explain why she was diagnosed with colon cancer at such a young age. A recent report from the American Cancer Society shows that the diagnosis of colon cancer in people under the age of 55 has doubled, from 11% in 1995 to 20% in 2019. The cause remains a mystery.
Colorectal cancer is the third leading cause of cancer-related death in both men and women in the US, according to the American Cancer Society. It is expected to cause more than 52,000 deaths by 2023, the organization estimates.
Regular screening with a colonoscopy or other strategies should begin at age 45, notes the Centers for Disease Control and Prevention.
Barrett urges people of all ages to listen to their bodies and not delay checking.
“Don’t delay seeing a doctor. Go immediately. I was delayed for six months. I shouldn’t have accepted their timeline, but went in to show it immediately so I could have taken care of myself on my own timeline . ,” she says.
“I feel like six months may have even pushed me to stage 4. If I had checked out earlier, it wouldn’t have progressed to that level.”