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No one ever mentioned to Rick Rivers that his grandfather died of colorectal cancer — until Rivers himself was diagnosed at age 31. Cancer felt like a taboo topic in his family, where diabetes, for example, was not. And especially so, because of where the cancer grew in his body.
"There's a shame factor to talk about certain areas of your body and them not functioning the way that they're supposed to," says Rivers, a father of three in Williamstown, N.J.
So the topic never came up, he says, even though colorectal cancer occurs more often and is more lethal among Black people like himself.
Colorectal cancer incidence keeps increasing, and it is now the type of cancer most likely to kill people under age 50. The fact that it's killing so many is a baffling paradox for Dr. Neil Parikh, a gastroenterologist at Hartford Hospital in Connecticut, because it is entirely preventable.
It takes years for those tumors to grow, and colonoscopies or fecal tests like FIT or Cologuard can reliably catch cancers early enough that they're relatively easy to treat.
"This is a cancer that if you find a polyp — a little pimple on the inside — and you remove it, you can prevent it," Parikh says. "Yet we're seeing this rise."
Insurance limitations or lack of awareness can prevent people from getting screened. But Parikh says one of the biggest overarching challenges is the persistent stigma and reluctance to discuss this part of the body.
The solution, he argues, is simple: "We need to talk more about poop."
Parikh notes it's this key patient demographic of younger adults where this scatological silence is most intense.
"If you mentioned farting to my 8-year-old, they love it — but yet then we can't fart in public for the next 40 years of our life," Parikh says. Then again with older relatives — grandparents or my great aunts and uncles — can't stop talking about their bowels and constipation. "I mean, it's just a strange thing we do as humans."
Clinically, too, he says people in their 30s and 40s are less likely to discuss warning signs like bloody stools or changes in the regularity of their bowel movements. "The last time another 40-year-old told me they had a good bowel movement … that's a rare conversation," Parikh says.
This reluctance can have real health consequences. The Colorectal Cancer Alliance's survey shows younger patients' symptoms often go ignored, delaying diagnosis and treatment. But self-advocacy is critical, says the group's CEO, Michael Sapienza, especially for those under age 45 experiencing warning signs.
That's because insurance coverage for colonoscopy and other screenings is not standard until age 45. So early cancers can easily be missed. As a result, 3 out of 4 colorectal cancer diagnoses in young people are late-stage, Sapienza says.
Sapienza says if you're under 45 and experiencing symptoms, or have a family history of colorectal cancer, you should seek testing.
Though they are ineligible for free preventive screenings under federal U.S. Preventive Services Task Force guidelines, high-risk underage patients can still request doctors order an exam. It will be billed as diagnostic, which could mean the patient has some out-of-pocket costs, or have to get additional authorization from their insurer.
Too few pursue that, Sapienza says, because they're often busy with work or raising families and, again, screening can require vocal self-advocacy about topics people would rather ignore or not mention.
Thirteen years and many major surgeries after his diagnosis, Rick Rivers — a judo aficionado — is now cancer-free. And he is trying to normalize talking about cancer screening among people his age.
"That is definitely something I try to champion whenever I talk to some of the guys my age, whether I'm taking the boys to practice or family events, friends' gatherings, and stuff like that," he says.
He has found that persuading someone to take the time to take a test can be a longer process of building trust, first, before broaching the topic.
He's learned how to craft his messages by bringing it up in the context of a person's life priorities. For example, if he's talking to a family man, Rivers will emphasize the desire to live long for the kids.
"It's a case-by-case thing: Speak to that thing that they value most and that they want to keep in their lives or they want to stay in other people's lives for a particular reason," he says. "That usually works better.
So far, Rivers says he's convinced several people — including other parents and friends at his judo dojo — to get screened.
