My father-in-law is from a small Greek island called Chios. Ocean breezes permeated his youth, which was spent making toy boats out of sticks and whatever else he and his friends could find, making whatever mischief he could, and fully enjoying being alive. He had a happy, innocent, and rich childhood, despite the fact that his family, and everyone else on the island, were making due with very little, left, as they were, in the wake of war. If that depravity affected his life at all, it was to make it richer and simpler, with perhaps the one negative result being a compulsion to overeat based on a refusal to never waste food during his adult years. Now, for maybe the first time in his life since not having enough food to eat as a child, he’s facing a threat to his health, one that he is ill-equipped to handle: diagnostic testing.
I’ve written here before about watching family members face the very health issues that I try to write about here and elsewhere. This PLoS forum is best used for presenting and unraveling studies and issues from the world of drug development. But when I see these issues cropping up among people that I know, it’s always kind of shocking. It’s no longer happening “out there,” in the anonymous world of websites, but among people I know, which ends up being a confirmation that these issues really are problematic.
So, in that light, I wanted to post about the most recent turn of events, picking up where I left off in that post mentioned above. After more than $30,000 in medical bills from non-Medicare covered overseas healthcare, my mother-in-law has had a series of procedures, mostly focused on inserting stents into a pathway that her body somehow created after her gallbladder was removed – a fascinating piece of medicine in its own right. Alongside those procedures, I’ve watched a mini healthcare craze sweep through my family. One relative cheerfully showed me pictures of stones that were eliminated from her body during a cleanse that she did for the purpose of improving the health of her kidneys. From this I learned that looking at other people’s eliminated stones gives me the same feeling as looking at, well, waste: if there’s a reason why I need to see it, fine, but if not, then I’m happy to issue a hearty no-thanks. This relative also told me about watching the DVD of my mother-in-law’s operations that the doctor had provided. I had no idea that hospitals were issuing such keepsakes these days!
My father-in-law was the next recipient of the zeal. He went in for a full check-up, a good thing seeing as he hadn’t had one in years. The doctor found blood in his urine. During follow-up tests to examine his prostate and colon, all checked out normal. With the cause of the bloody urine still undetermined, a doctor recommended a CT scan. The results of the scan showed a spot on his lung. That was the text message my husband received: “Dad has a spot on his lung, they’re going to do more tests.”
Two thoughts came in quick succession upon hearing that. First: panic. Could five words be any worse at inducing worry? Well, I suppose so, but you get the point, these are pretty bad. The vagueness coupled with the fear of imminent suffering and death – not only is this phrase a recipe for disaster, it is also a recipe for making us unable to think rationally. Fortunately there was a little word in the back of my mind that helped turn off the panic button: incidentalomas.
I’ve written here before about overdiagnosis, a phenomenon that is being increasingly recognized, especially in the wake of recent news about PSA screening and breast cancer screening. So when I heard that my father-in-law had a spot on his lung, I was thankful to know that it is likely, rather than unlikely, that a scan will turn up something, and that much of the time, these somethings turn out to be incidentalomas, “spots” that will disappear on their own or never grow and aren’t harmful.
But the problem is that the rest of my family doesn’t know about incidentalomas, and I’m not sure if the doctor does. So there’s a very good chance that this spot could be a very bad thing for a man who has been feeling perfectly fine for most of his life. There is also a chance that this spot could be something harmful that can be treated with medical intervention. But already, several people have been thrown into a panicky tailspin because of a spot on a lung found during a CT scan to try to understand the cause of bloody urine, which, if it’s a problem, probably has nothing to do with the spot on the lung. My father-in-law is not equipped to comprehend medicalese, which makes him subject to the opinions of others around him, who may or may not have space in themselves to consider the idea that this spot could be, well, just a spot.
This situation is exactly the one described in “Overdiagnosis” and elsewhere. It’s why Steve Woloshin and Lisa Schwartz’s book, “Know Your Chances,” is so important, alongside Gilbert Welch’s “Should I Be Tested for Cancer: Maybe Not and Here’s Why.”
Obviously, these are understandings that can easily be conveyed to family members. But to be honest—and I mention this because I think it’s part of the picture, and the problem—it’s hard to do that, because what if the spot really is something bad? Do I want to risk diminishing its significance, only to find out later that my advice led to his demise? There is also nervousness of walking into a mine field built on a zeal for getting the family into good health after my mother-in-law’s ordeal. After all, I’ll be talking to people who stole her car keys for fear that she would try to go home before they were ready to let her. (Back in the States, she was seeing doctors on Long Island, where family lives, rather than near her home in Pennsylvania.)
In the meantime, by the way, their insurance has gone up to $500 per month because Medicare doesn’t cover all their needs, which is problematic for people who are basically living off of Social Security payments.
It seems important to mention individual stories when possible here, because they are so good at illustrating the complexities of healthcare. Sometimes I almost can’t believe how much the stories I am watching unfold with my family mirror so exactly what experts and clear-thinkers are unraveling in books and other media. I know mine are anecdotal reports, and I am not using them to support one kind of thinking over another. But they go a long way toward reminding one that all of these issues are issues because of the fact that, ultimately, they affect individuals.