Giant Cell Tumor and Doctors

Let’s talk for a minute about doctors.

I live in a town of approximately 100,000 people in central Oregon. When I was diagnosed with a bone tumor at one of the two orthopedists in the city, I was straight away handed my file and x-rays and referred out to specialists in Portland, Seattle and even Texas, because there’s literally no one in my hometown who is qualified to treat my GCT. I ultimately chose to have it handled at Shands in Florida, for a variety of reasons; I have family working in that organization who helped fast track my case, I have family in Florida who could put us up and assist with recovery and, most important of all, Shands is a learning hospital that has a surgeon on staff who specializes in rare tumors including GCT.

Since having my operation and returning home I’ve found it interesting that when I go to doctors for other reasons – sinus problems, my SIBO, random illnesses, what have you – they’re often interested in chatting me up about my tumor. Sometimes, more often than not, honestly, during the course of conversation they’ll say something unintentionally unnerving. They’ll mention something about how it was treated, or the accuracy of its diagnosis based on this or that, or they’ll express some eyebrow raising curiosity about some aspect of its story. The first couple of times this happened it freaked me out and sent me home with niggling doubts in the back of my brain.

It is, however, very important to remember that Giant Cell Tumor is a rare condition. It’s estimated that it effects literally one in a million people. While you can easily find online communities where others with GCT congregate, this belies the reality that this happens to precious few people.

This leads me to two conclusions.

One – If you’re diagnosed with GCT, you shouldn’t just default to whoever in your city says they can handle it. Perusing social media support groups I’ve learned that treatment runs the gamut from just scraping the thing out and leaving it to filling it with cadaver bone, to filling it with bone cement to plating it to what I had done – scraping it out, hitting the remaining pocket with an argon laser to try to ensure none survives, and then filling with a combination of cadaver bone and bone cement and plating it (leaving out resecting the affected bone entirely). Through these support groups I’ve read of people who’ve had their tumor begin to grow anew two, three, four times.

I’m not insinuating that I know any treatment is better than any other, or that my treatment was better than anyone else’s. However, not having the option to have it treated locally forced my wife and I on a journey to find the best people who would perform what we hope is the best treatment. In a more just world – one where medical bankruptcies don’t account for more than half the bankruptcies in this country – everyone would do this sort of shopping with their health. Both of my parents died in podunk hospitals in podunk towns in situations that I’m almost certain would not have occurred had they not simply defaulted to what was within driving distance of their homes. I am, in fact, convinced that my mother died due to negligence at the shit kicker hospital where she was treated, and released, and treated, and released.

I digress. My point is that your health is important, and if you’re diagnosed with something weird and rare like GCT it’s in the best interest of you and your family to seek out the experts who are most convenient to you if you can muster the bandwidth to do so.

Which brings me to my second point. I am, by trade and by hobby, an IT guy and I have been for nearly 25 years now. While I’d never introduce myself as such, for the purposes of this analogy I’d venture to say that I’m an IT expert. However, if you bring me a super-rare computer running a super rare operating system and ask me to immediately be proficient with it, or fix it, or even adequately explain it, I will fail you. I could absolutely make some educated guesses and most-likely-accurate assumptions based on what I could see and my understanding of the basic foundations of technology, but to go any deeper I would have to do a fair bit of research and investigation. This doesn’t mean I haven’t expertise in technology. This means it’s impossible to have expertise in all technology – not just for me, but for everyone.

I find that doctors are an interesting breed. There’s usually more than a little bit of ego to be found in most of them, and this is completely understanding for the field. It might even be a prerequisite in order to be better than average in a profession that can mean sickness or health, life or death. You wouldn’t want a doctor that isn’t confident in their abilities. That said, it’s this very confidence that can cause a doctor to speak, perhaps a bit out of turn, about matters that are at best tangentially related to whatever their actual field of expertise may be. So if your general practitioner or your ENT or local orthopedist chats you up about your GCT and their statements or line of questioning unnerves you, take it with a grain of salt. The likelihood that they have any real professional experience with Giant Cell Tumors is very low. They’re working with what general tumor/bone tumor information they do possess, and are being led by or making assumptions based on that. No matter how confident they sound. Again, remember – being (or at least sounding) confident is part of their job.

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