The harms of cancer screening: It’s time to get personal

Can cancer screening be harmful?

Among those of us who read or write about screening for our jobs, it’s an easy, emphatic answer: Yes of course it carries potential harms–just like any medical intervention.

Yet, the notion that screening might have negative effects isn’t something that the general public hears very often. Instead, we’re confronted with the “early detection saves lives” mantra echoed by many health organizations, from the myriad “pink ribbon” campaigns to local health fairs that insist people get screened to stay cancer-free.

For this reason, we were pleased to see an NPR report on a new study published in JAMA Internal Medicine that looked at the impact of implementing a large-scale lung cancer screening program using low-dose CT scans. In this case, the population was a large group of U.S. veterans who were either current or former heavy smokers. 

The researchers concluded that the screening program required considerable clinical effort for an “as-yet-uncertain” patient benefit. In other words, screening flagged a lot of people as possibly having cancer who, upon further (invasive, expensive, anxiety-inducing) testing, ultimately didn’t.

This “as-yet uncertain” declaration clearly surprised a lot of readers of the NPR story. Via Facebook, many readers expressed dismay, suspicion and even downright anger that researchers would conclude that screening is anything but important and beneficial.

“The article keeps mentioning potential harm, but never does actually name a harm. There really is no harm,” said one commenter, Kristine Beck.

“First you come out against yearly checkups, next you run an article saying mammograms are done too often, now you are coming out against lung cancer scans?” said another, commenter Wendy Newman. “Are you sure you’re not being funded by the health insurance lobby?”

‘I was devastated. I thought I had cancer.’

As we’ve seen occur on many science-based topics, there’s often a disconnect between what the science shows and what many in the public think. When it comes to something as vital as cancer screening, how do journalists help the two align better?

First, follow NPR’s lead: Report on screening studies that surprise the status quo, not just those that confirm people’s beliefs. And in general, when reporting about cancer screening, do so in a complete way–discussing not just the benefits, but also the harms and risks. (Actually, do this for any medical intervention you report on, even “simple” blood tests.)

And second, get specific. As the Facebook commenter mentioned above noticed, NPR didn’t really dig into the details much–but there are plenty of potential harms, including the risk of:

• Physical harm, including radiation exposure, and complications that can arise from needing further testing, such as a needle biopsy
• Mental harm, from the anxiety and stress of worrying about an “incidental nodule” (as many veterans in the study asked, what exactly is a nodule?)
• Financial harm, as testing costs time and money, even when you have insurance

Third, talk to patients who can speak personally about what it’s like to receive the news that they “may” have cancer. Stories about screening often tout its “lifesaving” benefits and feature patients who appear to prove that a life has indeed been saved. But the harms of screening almost never are personified with the same vivid detail. We realize this is one of the hardest things to find on deadline. (We met this roadblock ourselves in the course of reporting this blog post, when we were unable to directly track down a study participant who could speak about the downsides of cancer screening.)

But we did find compelling and specific anecdotes, such as this quote from qualitative research conducted by the Health Services Research and Development Service at Portland Veterans Affairs Medical Center in Oregon:

“Basically I was devastated. I thought I had cancer. I called my son and my daughter-in-law and told them I needed to talk to them. You know, in Oregon they got assisted suicide, and there is no way am I gonna be like my mother. I do not want to get to that point…But I would go the route of assisted suicide.“

And when it comes to physical complications, “you can end up with a pneumothorax (a collapsed lung), which sometimes requires a chest tube…you’ll be in the hospital and be watched closely,” said Dr. Preeti Malani, a University of Michigan medical school professor who has worked as a journalist.

Complications occur ‘more commonly than many people realize’

Hemorrhaging and needing a blood transfusion is also a risk. All of these occur “more commonly than many people realize,” a researcher said in a MedPage Today article about a 2006 analysis of hospital discharge records from four states that looked at outcomes related to lung cancer biopsies.

We have to wonder, had details like these been included in the NPR story, would the Facebook commenters’ backlash had been as hostile?

Being specific about harms–as well as putting a human face on the story–helps elucidate a tough topic, agreed Dr. Linda Kinsinger, the lead author on the JAMA Internal Medicine screening study. She is now retired but served as the Veterans Health Administration chief consultant for preventive medicine.

“I think there’s a lot of people even in the medical profession who don’t really understand [screening],” she said. “It’s a tough thing to understand, and very difficult to explain to patients. It’s really complicated.”

Malani agreed. “My sense is … for a general audience, the idea of harms is not necessarily part of the calculus.”

“Especially with the news, it’s changing so much right now. Having that human voice, it really helps magnify your message.”