Sunday, December 28, 2014

Confessions from a fledgling patient scientist

Boy was I naive when I went in for my first "after the dust had settled" appointment with my new oncologist. It was almost 5 years ago in human years, but really it's been 34 in surviving a catastrophic cancer years. When I look back on that initial appointment, I can't help but think, "what just happened there".

Naive assumption #1, My oncologists would know everything about my especially rare, I mean not even 30 seconds on the grill rare, cancer. He WAS a sarcoma specialist at Harvard for goodness sake, clearly he is omniscient. So when I went in loaded with papers freshly printed from pubmed, with information down to the impact factor in the literature, I was shocked that he hadn't already read them. Come to find out that (with many exceptions!) PhD's and MD's approach medicine a little differently. Being in a lab, not seeing patients kind of frees up the time to scour the literature. Having only one of the hundreds of sarcoma subtypes probably also made it a bit easier to stay current on my particular flavor of this disease. Not actually treating patients and being trained to understand the conformational changes required for tyrosine kinase inhibitors to function maybe made the literature an easier read too. But man, what a shock. I now know many MD's and MD, PhD's who are as comfortable with the lit as the academics who are publishing the basic science. In fact, at my last appointment with my oncologist, he was citing the literature to me..brought a smile to my face, a big giant smile --> :) see?

Naive assumption #2, My oncologists would know how to treat me. Not the case, and not their fault. But that was not a very tractable version of reality back then. I get it now, and try and help newly diagnosed patients try and wrap their minds around the this seemingly simple but depressing fact: There are not enough of us to generate the data necessary to formally know how to treat us. We now try and refer as many patients as possible to a handful of sarcoma specialists so that they can at the very least develop as much anecdotal evidence as possible on angiosarcoma, and it's working. There is now some bonafide expertise in the world!

Naive assumption #3, I would go to the doctor and they would handle everything. Ha. Hahahahahaha. This one needs some work folks. No patient should have to jump through hoops to chase their medical records. I was in shock, literally, from the diagnosis. "Pick up the phone, dial numbers, ask for scans.." Seems pretty easy now, but I was stuck on "pick up the phone" for so long that I missed appointments, brought the wrong records, lost files, and contemplated sucking my thumb instead. I would love love love to hear from people on this disparity. The more ideas the better, someone please have ideas?!?

So, after 34 survivor years, I feel like I'm better equipped to handle my appointments. Maybe more importantly, so are my oncologists:)

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