My head and neck surgeon at MDA referred me to their endocrinologist, and I thought, "Why not?" I like my endo just fine, but her office staff is neither friendly nor supportive. I always feel as if I'm inconveniencing them when I call, if I actually connect to a human. If I don't connect to a person, I inevitably get bounced to a voice mail box that is full. This year, because I wanted to be tested at a more local hospital, I had to make a half-dozen phone calls to figure out where the order should be sent. That's not my job, and I resented it having to do it. I'm glad I did, though, because for the first time ever I didn't have to drive all the way to Phoenix for my testing.
My tumor marker test results finally came in, slightly lower than last time (3.60) at 2.90. But my new endocrinologist and I discussed whether this result is useful or meaningful for someone like me. Her opinion: at this point, it's detectable vs undetectable. I should haven't any cancer activity, so the tumor marker should be undetectable. The fact that it's not means I have some cancer somewhere, albeit (most likely) very small.
Since my ultrasound and my whole body scans consistently come back clean, even though my tumor marker is detectible, that says these tests aren't worth doing any more. (This has been going on for years, after all.) The new endo explains it like this: we know the cancer is there, but it's not showing up on these tests, so there's no point in doing these tests anymore. Half of me says, YAY! No more low-iodine diet, no more Thyrogen (r) trials, none of this foolishness anymore!
The other half says, Wait, what? Intellectually I knew that sometimes thyroid cancer just stops picking up radioactive iodine sometimes, I just never thought mine was like that... except it obviously is, since I've got cancer that doesn't show up on the whole body scan.
The new endo wants a thorough work up to stage my cancer, so next Friday I'm going for a lab test that looks at adrenal function (to see what's going with my pituitary), as well as a CT scan, a PET scan, and a brain MRI. It's going to be a fun (haha) and expensive day.
The good thing is, after all that, we'll know what we're dealing with, because honestly at this point all we know is that there is cancer somewhere. I've been operating on the assumption that it's small because it's not showing up on the whole body scans, but that's only one possibility. The other possibilities include a) it's not small and/or b) it's not picking up the radioactive iodine anymore.
I'm just glad it will be over relatively quickly, and I'll have some idea what's going on soon.
In other news, I had another round of x-rays on my broken toe and it's worse, at least the break near the bottom joint. I'm now buddy-taping two toes over and wrapping around the ball of my foot to try to stablilze it, and I'm back to elevating the foot and icing it as often as possible. I could not possibly be more irritated with that situation.
On the other hand, I watched and enjoyed season 3 of Netflix's Jessica Jones (spoiler, foreshadowed from the very beginning of season 1: Trish was the monster all along. ) and all of season 1 of HBO's Big Little Lies, and I've read two Terry Pratchett novels and have one last one I'm kind of saving. Plus I'm listening to the McElroy's podcast The Adventure Zone, and am caught up with Amnesty but just started the Balance arc. If I'm going to just be listening, I need to find something else to do, so I'm actively toying with the idea of a knitting project. I just don't know what to knit!
Niece & nephew are visiting next week from New Orleans, and then the following week DH and I are heading east. Summer's not flying by but it is going by faster than I'd like!
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