Colon cancer was not on Carly Barrett’s radar when she suddenly began experiencing stomach symptoms at the age of 24.
She had no family history of the disease and no other health problems.
A major illness didn’t seem possible for a young teacher starting her career, traveling with friends and enjoying life with her husband-to-be.
Still, those lingering symptoms concerned Barrett. She noticed blood in her stool, experienced stomach pain, lost weight and felt a mass in her abdomen. Looking 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 absolutely not normal and urged her to go see a gastroenterologist.
That GI specialist’s office scheduled her for an appointment six months down the road, which Barrett took as a sign her symptoms couldn’t be that worrisome. Colon cancer was still 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 to people who don’t have it in their family,” Barrett, who is now 28 and teaches 4th grade in Louisville, Kentucky, tells TODAY.com.
“But it does, and colon cancer is not an (older person’s) disease anymore.”
'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 grew progressively worse.
She was coming back from a vacation in Europe when she felt “indescribable pain” in her abdomen on the flight from Spain to the U.S. The flight attendants cleared a row so that she could lie down and she was taken to the emergency room when she arrived home.
A CT scan and a biopsy revealed stage 3 colon cancer.
“You’re in a state of shock, and my next thought was just like, OK, what are the next steps? What treatment options do I have?” she recalls thinking.
Barrett underwent exploratory surgery during which doctors removed a large tumor and 2 feet of her intestine, she says. She had to adjust to life with an ostomy bag.
One of her ovaries was also removed because the tumor was pushing up against it. A month later — before starting chemotherapy that could lead to early menopause — Barrett went through an egg retrieval process with the one 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 at stage 4.
The next chemotherapy drug just kept her stable, which her doctor didn’t like. He wanted the cancer to shrink and recommended looking into immunotherapy. Barrett and her family sought opinions from prominent institutions but were initially discouraged.
One oncologist told her “immunotherapy would not work for me, and that I should just pretty much go home and be comfortable,” she recalls. The family wouldn’t accept that scenario and kept looking for options.
Cancer shrinks with immunotherapy
Finally, a doctor at Vanderbilt University urged Barrett to take part 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 was likely to respond to the treatment.
It did just that, with Barrett’s cancer finally shrinking. Today, she says she is in a state of remission and has no evidence of disease. She opened up about her story on TikTok to show other colon cancer patients that there are successful stories.
Doctors have never given her “any sort of 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 monitor for any recurrence.
Barrett got married in April 2022. A month later, she underwent an ostomy reversal and no longer has to live with an ostomy bag.
“Physically, I’m able to function as normal,” Barrett says.
“Mentally, I’m still trying to get back to normal, but I don’t think I ever will. I’m kind of getting used to this new normal.”
Doctors haven’t been able to explain why she developed colon cancer at such a young age. A recent report from the American Cancer Society finds diagnoses of colon cancer in people younger than 55 have doubled, rising from 11% in 1995 to 20% in 2019. The cause remains a mystery.
Colorectal cancer is the third-leading cause of cancer-related deaths in both men and women in the U.S., according to the American Cancer Society. It’s expected to cause more than 52,000 deaths in 2023, the organization estimates.
Regular screening with a colonoscopy or other strategies should begin at age 45, the Centers for Disease Control and Prevention notes.
Barrett urges people of all ages to listen to their body and not to delay getting checked.
"Don’t put off going to see a doctor. Go immediately. I was put off for six months. I should have not accepted their timeline but gone in to get it seen immediately so I could have taken care of myself on my own timeline,” she says.
“I feel like that six months might have even pushed me to stage 4. If I had gotten (checked out) sooner, it wouldn’t have progressed at that level.”