Friday, December 18, 2015

A Picture Is Worth a Thousand Words, But How Many Numbers Is a Graph Worth?

So about those tumor markers...

The PA or oncologist will usually go over the recent values in my tumor markers as part of our routine appointments, but this week I found even better access to the numbers. It seems the SCCA eventually sends my test results to UW Medicine where they become part of my medical record and, eventually, wind up on the patient website where I can see them.

In fact, not only can I get the numbers, I can get a graph of the numbers. And here it is:























I have to say, the graph is somewhat more terrifying than the numbers were. I mean, thirty-six is clearly bigger than thirteen, but knowing that doesn't really give you a sense of how much bigger and/or how much that difference matters.

Now granted, if the vertical scale on this thing were set to, say, four or five hundred the graph would be a lot less scary, but I'm going to assume that the vertical scale was established with some measure of thought (and not just as a function of the highest test result). So scary it is.

Certainly it makes it clear why the doctors were a bit shocked when I opted out of chemo the first time. Looking back, the infusions were certainly working -- well, provided your definition of working is "keep the tumor markers low" and doesn't take into account fatigue, neuropathy, and the rest of the cornucopia of side effects.

The capecetabine also seems less impressive now. Pretty much since I started on the pills the markers have been increasing. I didn't notice that in real time.

Finally, while the irinotecan is definitely showing an impact, it's a little disturbing to see I'm still significantly above the normal range.

Of course, they say tumor markers may or may not actually correlate to tumor size and that it's the scans that matter most, so maybe as bad as the graph is it's really not something to be concerned about.

Yeah, right.

At this point I'm trying to remind myself that I've had good reasons for all the decisions I've made so far, but I can't say the graph is making it easy. 

I hate second guessing. 

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