A patient’s perspective on an NIH/NCI news release – a punch in the gut

The following thoughts were sent to me by Carol Countryman, who had chemotherapy and radiation therapy for Hodgkin’s disease in the early ’70s.  She’s had two mastectomies and last year was diagnosed with delayed-onset myopathy from the radiation – a new disease and very rare.  She says her quality of life “is already a bit grim and now I read about stomach cancer.” Here’s what she wrote:

Dear Gary:

Today I read a news release headlined “NIH Study Links Hodgkin Lymphoma Treatment to Possible Risk of Stomach Cancer.”

After reading the article, I felt like someone punched me in the gut.

This sentence was most troubling: “Of 17,477 Hodgkin lymphoma cases examined, the researchers identified 89 survivors who later developed stomach cancer.”

Isn’t that an infinitesimal number? That’s only one-half of one percent.  But that wasn’t made clear in the article.

I’m not a medical professional and don’t pretend to have the background necessary to understand these things, but it seems as though it’s unnecessarily scary.  In addition to my primary care provider, I’m seen by my breast surgeon and an oncologist, none of whom have mentioned any concerns about stomach cancer.  I’m bright and I’m strong and certainly could have handled such information (although the article does say that most cases occur before age 50, and I’m 71).  So my question is, is this really news that we survivors need to know or is the relationship between the radiation (admittedly nasty stuff, especially in the quantities used 40 years ago) and the incidence of stomach cancer a bit sketchy and so rare as to be difficult to establish a cause-and-effect

Putting such a headline in a publication available to the lay public creates an unnecessary threat of anxiety to patients who’ve already suffered a great deal.

Certainly the information must be available, but I believe the very slight risk of stomach cancer should be given greater prominence.  Bad news doesn’t go away because we wish it would, but neither should we endure worry and fear out of proportion to the facts.

Many people may not read beyond the headline, or if they do they may not stop to figure the percentage in one sentence of a seven-paragraph article containing lots of numbers.

Scientific candor is essential, but so is perspective.

Carol’s comments are exactly why we have published this website for more than 7 years.  Many times in many venues, we are novices in how we communicate about risks. I think there’s often a huge disconnect – a chasm – between those who communicate about health care and their audiences.

It’s a chasm we try to bridge on this website.  Thanks to Carol for sharing her story.  I hope we – somebody – can learn from it.

Meantime, another patient perspective – this time on health care costs – was published in a letter to the editor in my local newspaper, the Star Tribune.  It read:

“Recently I had an experience concerning supplies that made me see that I can help fix America’s medical cost spiral. Maybe others can, too.

I’ve been using a CPAP machine for apnea and I love it, haven’t slept this well in years. The peripheral items used with the machine — headgear, a mask, hose and air filter — can be replaced periodically.

I realized the only thing I needed replaced regularly was the headgear, which loses its stickiness. I called the medical supply company and asked them to send me the headgear only. The lady told me it was only sold together with the mask, and there was no other way to do it.

I knew my insurance company would be charged for $326 in medical supplies when all I wanted was $45 worth. A manager told me he didn’t really know why, but that’s the way it was done. I told him I thought the insurance company was getting ripped off and that it was a dang shame, or words to that effect. Soon he said he would be happy to get the headgear for me by itself.

So I instigated one change that will reduce the cost of medical care, one or two hundred dollars a month. Now I feel like a superhero. If I can do it, others can, too. It was fun.”

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