And Knowing is Half the Battle

…the other half is waiting.

I called the neurologist yesterday, and was actually sorta surprised he called back. I was pretty sure he was implying that he was putting my case through MGH’s clinical conference thingamabobs, which are once a week deals, and I had no idea exactly how long that would take to get lined up. But there’s that part of me that says that he’s a busy guy, MGH is a big place, and computer systems magically lose requests, based on how frickin’ crucial they are, so maybe something fell through and after a week and a half, it wouldn’t be unreasonable to check.

It seems that they do these clinical case presentations on Wednesdays, and today I’m up on the block. Jeez, like my damn ears and face and head haven’t had that ringing, twangy feeling anyway. They all talk, and then they talk to my neurologist here, and then I have a plan to work from.

So here’s the deal: I have what is apparently a benign cyst in the pituitary area. It was there on my MRI in September (the one I thought looked… not like older ones, though I’d be damned if I could say why. I had a couple to compare it with, however). He does not think it looked significantly different this time around… At least, not to the point that flags would raise. Then again, it was missed twice in the first place, so take that for what it’s worth. (Truthfully, I get the impression they tend to spot the ones that are horrendously obvious and dangerous or the ones that are mostly incidental and asymptomatic, and the symptomatic, slightly oddly placed anomalies that present with an odd set of symptoms — diabetes insipidus as opposed to odd cortisol or thyroid/growth/you name it hormones — are easy to overlook. I have heard more people with diabetes insipidus say it was missed the first three or four MRI readings.)

Best I can tell, this is consistent with his suspicion of what’s going on. I am hoping that because I have other stuff involved that’s a little easier to get at, we won’t need to go in after it. I don’t get the impression that it’s necessarily squashing anything horribly (although the process that ultimately makes it grow might be squashing things, which might be why my face feels weird). Usually pituitary surgery for things other than diabetes insipidus result in… temporary diabetes insipidus (I guess it clears in a few months). I haven’t found too many people who have had it resolve if it existed beforehand. All things considered, it is also a small part of the equation, so I’m hoping they can poke skin and lymph nodes and just about anything but that… because from what I gather, inflammatory causes of that stuff (as this apparently looks to them right now) tend to respond to stuff that cuts down on inflammation.

It does all kind of start to add up. Okay… the thymus was just weird, and I guess even if I do have Langerhans Cell histiocytosis (or a non-Langerhans type) it may not have revealed it — because they know people with this stuff have enlarged thymuses much of the time, but it’s hard to tell why because a few have had previous rounds of chemo, which makes things look different. And when they have looked for this sort of stuff in other people’s oversized thymus glands (they do occasionally, I guess),  there’s as much chance they’ll see it there as not, existence of disease be damned. So it’s a weird thing, but not an incongruous weird thing.

For now, I sit tight. They are pretty confident that (this is an awkward thing to say) it is not cancer, even for all intents and purposes it kind of behaves like one. I don’t know how accurate my take is on this, but pretty much all of the histiocytosis type things originate in the bone marrow — they are sort of like leukemia, but then they aren’t. They seem to end up creating and dumping ginormous amounts of cells in places you’d wish they didn’t — usually your pituitary, your bones, your lungs, your skin — but it’s less a cancer type action than an immune response. Not like multiple sclerosis, which causes your immune system to attack the myelin on your nerves and strip it away, but sort of similar. Maybe closer to sarcoidosis, where your immune system randomly attacks and leaves scars and nodules on organs.  It’s a crazy-ass sort of category of disorders that looks like it ought to offer some insight into the link between cancer and immune system dysfunction, because it’s technically both, and technically neither.

You’d think more researchers would want to study that. And with essentially no concrete or remotely suggestive blood markers (just wait for the growths to start), you can see where this is a long haul much of the time. I also have a feeling that treating this will be pretty much the same — whether testing is conclusive for anything at all. I think my doctors are about as done as I am, and too much waiting is clearly no longer a reasonable request. I think it could come together quite quickly, or take a few years to be sure what it is, but at this point, they all are hit with the same set of hammers, with the force of blows adjusted as things change.

I’m okay with that. Then, I also had this weird feeling I am not the first person who reacted to the neurologist telling me that I had a cyst on my brain with the statement, “Ah, cool. That’s good to know.” And yes, so much easier to hear that than that everything was just fine, go home, nothing to see here, move along…

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