Only three days after Black Panther star Chadwick Boseman died of stage IV colon cancer, Nathan, a 37-year-old UPS worker from Long Island, was diagnosed with the same disease. Looking back, he had symptoms leading up to the diagnosis, but he attributed them to a combination of Crohn’s disease — which he’s had for 20 years — and a bad case of food poisoning at the start of the pandemic.
“I toughed it out, but the diarrhea kept up its pace. I was going like 10 times a day. I was able to deal with it using Imodium or an oxy if it was really bad,” he says. By July, though, he was in the bathroom up to 25 times or more a day, so he finally made an appointment with his gastroenterologist, who promptly ordered a colonoscopy.
Unfortunately, it was too late: The cancer had already spread to his liver.
Like Nathan, every year, 137,000 people are diagnosed with colorectal cancer (colon or rectal cancer) and more than 50,000 people die from it. It’s the third most common cancer in both men and women, though men are slightly more prone to it, and individuals 50 and over have been found to be the most at risk. And yet, the disease is confounding, as evidence suggests that up to 75 percent of colon cancer patients have no known risk factors. Similarly, a recent (and sharp) increase in advanced colon cancer cases among people in their 20s and 30s underscores a terrifying paradox: The younger people are, the more fatal their colon cancer tends to be.
Still, Nathan mostly blames himself for not catching the cancer sooner. “If anything, having Crohn’s should have made it easier to find because I should have been getting a colonoscopy every year or two. My last one before this was five years ago,” he laments. “Like most men, I thought, ‘If I ignore it, then it’s not happening.’ That’s why it’s at stage IV.”
That said, doctors like colorectal surgeon Jeffery Nelson, surgical director of the Center for Inflammatory Bowel and Colorectal Diseases at Mercy Medical Center in Baltimore, don’t blame Nathan or other patients like him for not reporting their symptoms earlier. It’s just that cases of early onset colorectal cancer — i.e., colon cancer cases in people under 50 years old — have spiked so fast that medical professionals and screening guidelines haven’t been able to catch up. “The rate of colorectal cancer in young adults has almost doubled since the early 1990s,” Nelson explains. He and other experts suspect this is due to a mix of factors, but a bulk of studies have pointed to the consumption of processed meats like bacon and cold cuts and rising obesity rates in the U.S. as a major cause.
New data indicates higher rates in the South and lower rates in the West, which is consistent with rates of obesity and smoking, but could also indicate environmental factors that have yet to be explored. “This finding suggests that early life exposures in addition to the ‘usual suspects’ may be contributing to the rise in early onset disease,” Rebecca L. Siegel, the American Cancer Society’s scientific director of surveillance research and lead author of the study, said in a statement. Although the study didn’t look at what these early life exposures are, air pollution in utero has been linked with other forms of cancer.
Ironically, while younger, seemingly healthier patients are being diagnosed with the disease, the demographic doctors used to be most concerned about — those 50 and above — have experienced improvements in screening, treatment and prognosis over the years. “The overall incidence of colon cancer has been decreasing, but the incidence of colon cancer in people less than 50 has been increasing,” Nelson says.
As such, in 2018, the American Cancer Society adjusted their guidelines to call for colon cancer screenings to be moved up to age 45 (from 50), but that doesn’t move the needle enough for younger people like Nathan. When colon cancer is detected early enough, up to 90 percent of individuals survive for at least five years, but preventative care is something that tragically doesn’t exist for anyone under 45. “This is where the dilemma lies: How do you prevent these patients from getting cancer if they don’t yet qualify for routine screening?” Jeremy Cumberledge, a gastroenterologist in South Carolina, tells me.
Plus, again, many of these cases crop up without a family history or any other red flags. “Early onset colorectal cancer patients have worse outcomes and more advanced disease,” Cumberledge warns. “This is probably due to the actual biology of the tumor being more aggressive, as well as possible delays in diagnostic tests. Either patients or their providers write off their symptoms due to the patients’ age.”
Moreover, early onset colon cancer can be easily confused for other gastrointestinal issues such as IBS, ulcerative colitis, Crohn’s and even hemorrhoids, which makes it easier for patients to ignore their symptoms and doctors to misdiagnose them. In fact, one survey found that 82 percent of “young-onset” colon cancer patients were initially misdiagnosed. And once more, by the time doctors figured it out, it was too late; in 73 percent of those cases, the cancer had already spread.
If discovered early enough, early onset colon cancer can typically be overcome with a combination of surgery, chemo and radiation. But the further it spreads throughout the body, the harder it is to treat. Stage III colon cancer is broken into three subtypes, depending on how the cancer has spread to the lymph nodes or nearby areas. Stage IV colon cancer — meaning it’s spread to distant parts of the body — is rarely curable, and treatment is generally focused on reducing tumor growth and spread. “In these cases, the cancer will likely eventually win, and the therapy is focused on delaying that from happening,” Cumberledge explains.
Among the most shocking examples Cumberledge has seen was during his fellowship in medical school, when a pregnant 19-year-old had some vague symptoms that included blood in her stool. Pregnant women can get hemorrhoids, but she was eventually given a colonoscopy anyway, which found stage IV cancer. “Every physician in clinical practice has those few cases they will never forget,” he recalls. “It shook all of us.”
Two years later, Cumberledge was overcome with emotion when he had to tell a 33-year-old man and his wife with three boys the same age as Cumberledge’s sons (1, 4 and 7) that he had stage IV colon cancer and that there were few treatment options. “I couldn’t fight back the tears,” Cumberledge says. “There are many other providers out there who have similar stories.”
Twenty-three-year-old Tiffany was diagnosed as stage IV in August, after thinking she had a simple ovarian cyst that needed to be removed. What was supposed to be a simple outpatient procedure turned into a four-day hospital stay to remove a cancerous mass in her ovary. During all of this, her surgeon noticed something firm in her colon and ordered more tests. “A few days later, they told me I had colon cancer,” Tiffany tells me. “Not only had it spread to my ovary but also to my liver, lungs and pelvic bone. Considering my age, this was a complete shock to both me and the doctors and nurses.”
Tiffany has no family history of colon cancer, isn’t overweight, doesn’t smoke, rarely drinks and didn’t grow up eating processed food. Her only health issues were mild vitamin deficiencies and a problem with her thyroid. “The doctors are puzzled as to how I could have this,” she says.
If any good has come from Boseman’s tragic untimely passing, it’s that it’s raised awareness about early onset colon cancer — particularly among Black men and women, who are disproportionately getting sick. In 2019 alone, colorectal cancer rates were 24 percent higher for Black men, per the American Cancer Society. And because they’re more likely to have their pain dismissed by physicians, they’re often diagnosed in advanced stages of the disease. As such, only 9 percent of Black men survive five years or more after their diagnosis, compared to 13.9 percent of white men and 16 percent of white women. Even with the resources of a movie star, Boseman, who was quietly diagnosed in 2016, only made it to year four.
Still, if both a teenager and a Marvel superhero in his prime are being diagnosed with stage IV colon cancer, why aren’t we being screened much sooner than 45?
The answer, unsurprisingly, lies in our profit-driven health-care system that bases recommendations on harsh cost-benefit analyses of health-care costs, population size and how likely people are to comply with screening guidelines. For instance, if doctors were to require annual colonoscopies starting at age 18, a procedure that costs around $3,000 on average out-of-pocket, they might catch 99.9 percent of cases early, but Cumberledge says “this would be a huge cost and burden to patients and the system for a relatively small return in the number of positive cases.”
“So considering that cost-benefit analysis,” he continues, “there are studies that show a steep increase in the incidence of colon cancer in the 48-to-50 range, right where people may begin screening, so that’s a natural point to address screening.”
The cynical truth is that unless something changes dramatically about how these numbers are calculated, significantly more young people would have to die for the recommended screening age to come down.
And so, in the meantime, the diagnosis for young people is mainly left to luck. Case in point: Adam, a 39-year-old iron worker, thought he had a hernia and went in for a CT scan for a workers’ comp claim. Instead of a hernia, the scan showed a thickening of his colon wall. “I brought that to my GI, and she ordered a colonoscopy. I had the scope a couple of weeks later, and when I woke up, she showed me a huge mass in a photo,” Adam tells me. After a biopsy, he was diagnosed with stage II colon cancer. Six months of chemo, however, wiped it out. “It wasn’t too hard on me, aside from some neuropathy in my fingers,” Adam tells me.
A year later, he’s cancer-free according to his most recent scan and colonoscopy. “Since they both came back clean, I’m good for another year,” he says.
Sadly for Nathan and Tiffany, luck wasn’t on their side, but their youth has helped them rally internal strength. Nathan has befriended a bunch of guys like him in Facebook support groups like Man Up to Cancer and Colontown. He’s also grateful for his husband’s emotional support, as well as the insurance offered by his job at UPS. “I wouldn’t be able to afford treatment without it,” he says.
Tiffany, too, has maintained perspective in the face of her advanced diagnosis. Since she’s strong enough to handle chemo and other treatments, she frames it as more of a chronic illness she will always have to manage. “My team of doctors are extremely optimistic about my recovery, however they said it may require lifelong care,” she tells me. It’s not ideal, but she refuses to see it as a death sentence — stage IV or not.
On days when the chemo side effects aren’t that bad, both Nathan and Tiffany admit that they can pass for healthy out in the world. The same thing was true for Boseman, who reportedly was able to conceal his cancer from pretty much everyone until it killed him. But as much as youthful stamina might be saving their lives, their age also gave their cancer a place to grow and hide. And so, even with the help of a good doctor, the onus to uncover it sooner was entirely on them.
“I encourage patients to keep seeking answers until they’re satisfied,” Cumberledge says. “Patients should be their own best advocate. Patients also know their own bodies the best and shouldn’t ignore signs or symptoms they find concerning. The best advice I could give is to find a primary-care physician who you trust and discuss these issues about screening and any symptoms should they arise.”
In other words, you’re on your own.