By Hallie Lieberman
I assumed when I was 45, I’d get a Cologuard test instead of a colonoscopy. The ads were everywhere, and pooping in a cup seemed much preferable to a day of fasting, GoLytely, and diarrhea, followed by sedation and a medical procedure that had a tiny chance of puncturing my colon.
At my annual physical, my doctor noticed I wasn’t up to date with my screening. When I told her I wanted to do Cologuard, she asked me about any family history of colorectal cancer.
“Just my Aunt Lissie who died of colon cancer at age 53,” I said.
“That makes you higher risk,” she said.
I mentioned my Ashkenazi Jewish heritage. Her eyes got wide. “We studied Ashkenazi Jews in medical school,” she said. “They have higher rates of colon cancer. You need a colonoscopy.”
“I’m scared that my colon will be perforated.”
She said that was extremely unlikely. She also warned me that Cologuard only detected 42 percent of precancerous polyps.
“Have I convinced you to get a colonoscopy?” “Uh, I guess, maybe,” I said.
If my doctor hadn’t viewed me as higher risk, I would have had no idea that Cologuard or a FIT test was the wrong test for me. And why should I have?
Unlike Cologuard, colonoscopies don’t have an $800 million marketing budget or a brand deal with Lil Jon. What he says in his “Get Low #2” video featuring a golden toilet – that “the Cologuard test can catch pre-cancer before it becomes cancer” – is a bit misleading. It can, but as my doctor told me, only less than half the time. And if you have a positive result from Cologuard, you still have to get a colonoscopy. Colonoscopy catches and removes 95 percent of precancers. It remains the gold standard because it doesn’t just detect cancer, it removes lesions that may become cancer.
I underwent my first colonoscopy at age 45 last month. I wasn’t sure what my doctor would find, but I didn’t expect her to remove a 25 mm polyp that was roughly an inch long. Nor did I anticipate waking up with my first tattoos — both inside my rectum. The tattoos help her to more easily check for recurrence during future colonoscopies, my doctor told me. She also let me know I had a few clips in my rectum because she had to use a special technique called endoscopic mucosal resection to remove the polyp with a tiny, hot, lasso-like device. None of this sounded like stuff that usually happened during a routine colonoscopy, so I became a little worried.
The polyp was “most likely precancerous,” she told me as my brain, foggy with propofol, processed the information that there was a tiny (maybe not so tiny?) chance I had cancer. I would have to wait two to three days for the biopsy to come back. My blood pressure shot up. I didn’t want to freak out, but when I googled the size of the polyp and found it had a 40 to 50 percent chance of being cancerous, I got scared. I couldn’t even finish my post-colonoscopy Jersey Mike’s turkey sub.
Colorectal cancer is now the second leading cause of cancer death in women under 50, and the first for men. In 2022, 20,805 people in the U.S. were diagnosed with early-onset colorectal cancer. Many women don’t realize colorectal cancer could affect them, says Dr. Travelle Ellis, senior medical officer of Exact Sciences, the makers of Cologuard screening kits. “[Colorectal cancer] hasn’t really been brought up to women as aggressively as [it has to] men.” Colorectal cancer screening rates are low for all demographic groups, but Black and Hispanic women are even less likely to get screened than white women. Black and Hispanic women are also more likely to die from the disease.
Nobody knows why these cancers are increasing in the under-50 crowd. While the same lifestyle factors causing colorectal cancers in the over-50 crowd — obesity, poor diet, sedentary lifestyle, smoking, and alcohol — could be to blame, researchers say these cannot fully explain the rise in younger people. Other concerns, including antibiotic overuse, changes in the food supply, air and water quality, magnetic fields, and circadian rhythms are also being investigated, according to Andrea Dwyer, director of the University of Colorado Cancer Center and advisor to the non-profit Fight Colorectal Cancer.
Dwyer was instrumental in lowering the screening age. Around 2017, she began hearing more and more anecdotal stories of young people diagnosed with colorectal cancer. After digging into the scientific literature, she found a 2015 report showing evidence of an increase among younger people.
Yet it wasn’t until she went to an advocacy event that she realized she really needed to change the way we think about colorectal cancer. At the event, she approached a group of 40- and 50-something women and asked when they were diagnosed. They said they didn’t have the disease, but their daughters, who were 18 to early 20s, did. “Oh, they’re here at the conference with you?” she asked. No, the women told her, they’ve all died. “I went to the bathroom and just started sobbing,” Dwyer said.
The encounter with grieving mothers spurred Dwyer to reach out to data epidemiologist Rebecca Siegel at the American Cancer Society (ACS). After modeling the data and discovering solid research that justified changing the guidelines, they lowered the age to 45.
For some, that’s not low enough. When Dwyer was discussing the guidelines at a panel, a woman in the audience stood up and shouted, “Shut up! People are dying!,” referring to the fact that these new guidelines wouldn’t save people affected in their 20s, 30s, and early 40s. “She wasn’t wrong,” but according to Dwyer, the evidence isn’t there for routine screening of younger people.
Younger people with symptoms like unexplained weight loss and rectal bleeding should see their doctors and not assume their symptoms are caused by something benign like hemorrhoids, Dwyer said. And doctors should give them colonoscopies and not dismiss their symptoms.
My former student, Frank Otto, is 36 and has stage IV rectal cancer. He said he had blood while going to the bathroom for years before his diagnosis. He and his doctor thought it was hemorrhoids.
Otto has had five surgeries in the past 16 months, plus radiation and chemo. Now he has an ostomy bag. “Someone told me [the ostomy bag] is a fate worse than death. And it’s definitely not,” he said.
The Cologuard test would have likely missed my precancerous polyp. It can be the right choice for those at average risk, according to Dwyer, which I thought I was because nobody in my immediate family has had colon or rectal cancer. But if one of your first-degree relatives has an advanced polyp, you aren’t average risk; having second-degree relatives with CRC is enough for some docs to bump you out of the average risk category. Nor did I know that if you are having signs and symptoms like unexplained weight loss or rectal bleeding, you also aren’t average risk.
I soon learned that my insurance, Kaiser Permanente, offered the Fecal Immunochemical Test (FIT) instead of Cologuard, which tests for microscopic traces of blood in your poop as opposed to blood and DNA changes like Cologuard does. The tests are very good at finding blood, Dwyer said. And more people are willing to do Cologuard or FIT tests. Dwyer said her mentor used to tell her that “the best screening test is the one that gets done.” However, they do have their limitations, she added. “They’re not preventing anything, because if there’s blood in your stool, the chances are you already have a cancer. And so their test is to find cancer,” she said. On a recent earnings call, an exec from Cologuard’s parent company said the company wants healthcare providers to recommend Cologuard instead of colonoscopies to average-risk patients. I asked gastroenterologist Dr. Henry Herrera if he would do the same. He said he would recommend Cologuard as a “good alternative to colonoscopy” for these patients. An average-risk patient, he said, has no symptoms or history of colorectal cancer, adenomas, or inflammatory bowl disease, and has no family history of colorectal cancer.
But not everybody realizes they are at higher risk, because many people don’t talk about their colon and rectal health with their family members. Dwyer learned her mother had survived colorectal cancer when she was in her 30s, 11 years after her mother was diagnosed. “Because it’s bowels, it’s poop, it’s gross, it feels kind of weird [to share],” Dwyer said. It was only after she had been working for years in colorectal cancer prevention that her mom said she’d had 23 inches of her bowel removed. “I would like to tell you that I’m an exception, but I’m not. I think I’m the rule.”
I went back and forth on whether I should do the colonoscopy. My mom told me not to. She said my grandmother’s friend had died from one. I imagined my death at age 45 for what I thought might be an unnecessary screening. But the risk of death from a colonoscopy is about one in 10,000 (0.01 percent), while the lifetime risk of colorectal cancer in women is about one in 24 (4.1 percent).
My dad, however, was adamant. His sister had been too afraid to get one and at age 51, went to the hospital due to vomiting. She got the colonoscopy she had been too scared to have, they found a large tumor, and she died 16 months later.
As I waited for my biopsy results, I obsessively googled my polyp, which I had named Larry. I have OCD with health anxiety, so my googling took me from TikTok gastroenterologists and Reddit threads of people with large polyps, to medical journal articles and pathologist training modules. I refreshed Kaiser’s patient portal for results every few minutes. Then, at 2:50 p.m. on Thursday, I got an email directing me to biopsy reports. It wasn’t cancer, but it was a highly precancerous advanced adenoma with high-grade dysplasia, “the highest risk stage of precancerous lesions,” according to a 2024 study by Xu Cao and others. It’s the step right before cancer.
My doctor had saved my life, or at the very least, saved me from rectal cancer. If I’d done a FIT test, odds are my polyp wouldn’t have been caught because a FIT test only catches 30 percent of advanced adenomas. By the time I got another FIT test (you’re supposed to get them yearly) it could have become cancer. Cologuard has a 69 percent chance of detecting these sorts of polyps, a higher rate than it does for other polyps, because mine was advanced.
Because I had an advanced adenoma, my family is now high risk. They’ve already scheduled their colonoscopies. I also need to have another colonoscopy soon. Instead of waiting 10 years, as people with normal results do, I have to retest in a year.
I am incredibly lucky. My aunt and ex-boyfriend weren’t. Nor was my best friend Allison who died of adrenocortical cancer at age 36. There’s no screening test for that, because it’s so rare.
How can we convince more people to get their colorectal cancer screening? Dr. Ellis says we can start by talking about it more with our families and friends.
This isn’t easy for many people because talking about our bowels is something we are trained not to do from an early age, particularly if we are female. But politeness could literally be killing us. So, the next time you talk to your parents or siblings, ask them whether they’ve been screened for colorectal cancer. It might be awkward; but if talking about your rectum can save someone’s life, then why not regale people with tales of your polyp at pool parties in between sips of White Claw and bites of All-Dressed Chips, as I did a few weeks ago?