Just continuing to document here, for my own benefit, so I can remember the course of events. A fill-in doctor increased my thyroid medication, and I have felt better over the past few days. So hopefully, that is doing the trick, and working my TSH back towards normal. Did find out that the calcium supplement I have been taking may be interfering with the absorption of my levothyroxine, so I guess I'll stop taking that, and go back to drinking milk (which I had been off of since my last bout with c-diff).
My regular endocrine doctor is back from vacation, and his office called today to say that my tumor-marker numbers are still HORRENDOUSLY high. Supposed to be near zero, and mine is now "lowered" to 137, after radiation. That's NOT good. The radiation was supposed to kill everything - resulting in ZILCHO (or near zilcho) tumor marker. This has him "scratching his head", according to Leanne, the very friendly nurse who has been communicating with me. There are three scenarios that may be causing such crazy numbers:
Scenario #1: The Marquette lab just plain old sucks, and is out and out wrong. To determine if this is the case, I will be travelling five hours round trip for a five minute blood poke tomorrow. That way we can compare my original blood work taken at Marshfield (which was high, but not THAT high) to THIS bloodwork, that will also be processed in the Marshfield lab. Comparing apples to apples, so to speak. My doctor trusts the Marshfield lab. He's not so sure about the Marquette lab. This is the best scenario by far, and so I'm hoping it's what is going on.
Scenario #2: I am one of the 15%-20% of people who make a specific "antibody" in response to thyroglobulin (the tumor marker), which whacks out the results of the thyroglobulin test... giving numbers that are either falsely high or low. This is a likely scenario, given that two of my three blood tests (the ones from Marquette) have shown high levels of this antibody... but the doctor doesn't quite trust the results. See scenario #1. If this is the case, then the easiest, most sure-fire way to ensure that the cancer has gone away and stays away - doing a blood test and looking for the tumor marker - is not an option for me. Don't know what other options they use to see if the cancer really is gone, if I do happen to be antibody positive. Should probably look in to that, but am hoping that scenario #1 really is the case, and I don't have to.
Scenario #3: Worst case scenario; the cancer is not the typical, slow-growing type, but a much more aggressive form. This can happen in about 10-15% of cases. My original pathology report did not do testing to determine a subtype, and did not do the genetic testing necessary to determine if the cancer is the more aggressive form. So that little bit of crucial information is unknown (again, thank you Marquette). This more aggressive form of cancer is a possibility, given the extensive spread in the neck that showed up in the PET scan, but it is not definitive. We just don't know yet. So we rule out scenarios 1 and 2 first, and hope that one of them is the case, and not scenario 3.
So, unsettling. I keep waiting of for the "good news" phone call that I thought I'd gotten a few weeks back. The REALLY good news. "All scans and bloodwork say that cancer is GONE." But we haven't gotten that yet. Just lots of vague, weird things, and questions that still need to be answered. So, we wait, and pray, and drive five hours, and get more pokes... but in the meantime, I work on getting stronger, and back to work and resuming normal life.
And try not to think about things too much.
ADDENDUM:
Got new lab results back from Marshfield. Scenario #1 is at least partly true. Marquette's lab results were an order of magnitude off. Which... thank goodness. No mention of antibodies in these new lab results, so I'm guessing Scenario #2 is out of the equation. My tumor marker thyroglobulin number did, however, go UP instead of DOWN after radiation. And is still too high. Went up to 39 from 30. Supposed to be zero. Normal range of a person with a full thyroid is 30. I don't have a thyroid. Something is making all that thyroglobulin, and that fact doesn't rule out dreaded scenario #3. And yesterday I spoke with the physician who did my original thyroidectomy. He assured me that he was thorough in removing every last little bit of normal thyroid tissue, because the thyroid was encapsulated. "I didn't hack through thyroid and leave any behind," he said. "I got so close, and was so thorough about removing it, that I paralyzed your laryngeal nerve, remember?" But, I told him, I WANT there to be normal tissue left behind, elevating my Tg number. That's the reassuring scenario. "But it's not the case," he said. "I'm sure of it. I got it all." And the hot spots on my strap muscles and trachea and esophagus and lymph nodes? "That wasn't from normal thyroid tissue left behind, I can tell you that. I don't know why they're lighting up, but your thyroid came all the way out. It wasn't stuck to anything but that nerve." So... don't know what to think about that little bit of info.
We're entrenched in "wait and see" mode. I go back in a few weeks for more blood work, and hopefully this time the thyroglobulin will be acting as it should, and decreasing instead of increasing. Hopefully, by then, I will not be so exhausted all the time, and will have started losing some weight, and won't have this annoying cough and dry mouth. Hopefully this all has been "recovery phase" and not "you're not done with this cancer thing yet" phase. Still waiting for the ultimate good news, that it's all behind me.
In the meantime, I'll continue to try not to think about it.
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