Why one woman’s emotional plea for early colon cancer screening may harm instead of help

By | September 7, 2018

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Kevin Lomangino is the managing editor of HealthNewsReview.org. He tweets as @KLomangino.

A photo from Jennifer Waller’s GoFundMe page for medical expenses.

A 32-year-old cancer patient has taken to Facebook to urge people to “get screened early for colon cancer” — and a number of news outlets are spreading her impassioned message without giving it sufficient scrutiny.

The news coverage is a classic case of muddling the distinction between diagnosis and screening, and it could expose readers to unnecessary costs and harms that almost certainly outweigh any benefit from expanded testing for colon cancer.

This is a common problem in journalism and one that we wrote about last week in this review of a story about carotid artery scans. It’s something we’ll be tackling in more depth next week with a primer that explains the ins and outs of screening and why it’s often not as beneficial as people think. Stay tuned.

Key distinction: Diagnosis vs. screening

Here’s a passage from Fox News’s story about the woman, a nurse named Jennifer Waller, who was said to be suffering from weight loss and abdominal discomfort prior to a colonoscopy that identified a tumor.

In the U.S., the guidelines recommend patients get screened for colon cancer beginning at age 50, which Waller said would have been too late.

“I made this video because here in the U.S. you don’t screen until you’re 50 years old. That’s 18 years from now,” she said. “I mean, according to my biopsy, I would be dead. And if I hadn’t gone in and if hadn’t been aware of my body, I would have been dead.”

But here’s the issue: It’s one thing to tell people suffering from unexplained weight loss and abdominal pain to consider getting tested for colon cancer, and quite another to tell perfectly healthy people in their early 30s that they need to go get a colonoscopy.

In the former case, it’s a hunt to explain symptoms that are already causing problems that might reasonably be caused by a disease such as cancer. That’s known as diagnosis.

The latter case is taking people who feel fine and proactively looking for a disease for which there are currently no symptoms. That’s called screening, and it’s not what happened in Waller’s case.

Read more: Understanding medical tests: sensitivity, specificity, and positive predictive value

Given the extreme rarity of colon cancer in people under the age of 40 (something we wrote about here), screening in this age group is unlikely to find many cancers. But it will most certainly expose younger people to harms including anxiety-provoking false-positives and colon perforation that can lead to serious or (very rarely) fatal complications.

It’s a numbers game that’s hard to win — which is why even one of the most vocal experts raising the alarm about colon cancer in young people said he wasn’t supportive of screening people in their 30s. Here’s what John Marshall, MD, Director of the Ruesch Center for the Cure of Gastrointestinal Cancers at Georgetown University, told us last year when we asked him whether he was an advocate for widespread early screening:

“Not at all. It’s the opposite of that. I think our current screening techniques — which are quite coarse and need to get better — would not serve this population well. I do not think fecal occult blood tests or colonoscopy should be implemented as routine screening in the under-50 crowd.”

The American Cancer Society in May 2018 revised downward its recommended age to start screening from 50 to 45 — a move that some experts said was based on theoretical, not proven, benefits.

Still, no major organization advocates colon cancer screening for people as young as Ms. Waller.

An obligation to do better

Ms. Waller’s video is emotionally wrenching and is obviously born from the best of intentions. I hesitated to criticize it because I can understand and sympathize with her motivation to help people. I just think her message needs some fine-tuning.

If she had said, for example, that young people shouldn’t ignore persistent symptoms like the ones she experienced and get them checked out by a physician, I don’t think we’d have anything to criticize.

But screening is a different matter, and I think we should all expect news media professionals who write about this stuff for a living to do better — and to not unquestioningly spread an imbalanced message that will hurt rather than help their readers.

Here’s the full video from Ms. Waller’s Facebook page, and some links below to some of what we’ve written about colon cancer screening.

So I would normally never put something so private on this platform but I feel the need to make people aware of getting screened early for Colon Cancer . I was diagnosed with malignant cancer 6 days ago and I want to make sure other young people get screened .so please share this video (which was so difficult to make😬)and get checked yourself. ❤️with lots of love Jen

Posted by Jennifer Waller on Wednesday, August 29, 2018

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