cancer management update

Dr M was, as usual, quite late to our appointment this morning, but then she made it up by staying to answer every last one of my questions. The only one she out-right ducked was, "What stage is my cancer?" She replied quite simply, "I don't do staging."

Wouldn't it be nice if we could play the "I don't do..." card whenever someone presented us with something we'd frankly rather not do?

Anyway: whether I am stage 1 or stage 2 is immaterial, because the treatment/management is the same, regardless, even if the 5-year survival rates are not. I let her get away with it. We had too much other stuff to discuss for me to waste time busting her on it.

Stats:
TSH: 0.25
T4 & T3 numbers were "a little low," she said, I don't have the exact numbers
Tg: 3.4
Tg Ab: undetectable (yay!)

TSH is still too high. She bumped my Cytomel up from 10mcg/day to 25mcg/day. Yikes! I have been taking 2 5mcg pills in the morning, so this afternoon I popped 3 more, and you know, I do feel pretty peppy. We'll see how it goes in the longer term. I have to watch out for heart palpitations and general anxiety, as well as other hyper symptoms; if those develop, I can drop down to 20, but she really wants to get that TSH down to undetectable for now -- eventually it can come up to 0.10, but she wants it way, way down. Fine by me.

Next labs will be in 6 weeks, and I have already made the appointment. After the appointment, I'm to call her to get the results and see if we need to tinker with anything.

The next labs will be a good indicator of how things are going. Because I do not have Tg antibodies, my Tg readings are a reliable indicator of whether or not I have any remaining thyroid or thyroid cancer activity. So, Tg should decrease over these next 6 weeks. My pre-surgery Tg was over 300 (consistent with having a thyroid, not at all freakish), and she didn't seem to think it still being 3.4 four months post-op was unheard of. Still, she'd like it to be undetectable, too. Update: according to this site, the normal range for a female with a thyroid is less than 40! Who knew? Obviously I didn't, when I wrote this yesterday. The fact that my Tg was up around 300 is, I think, a pretty good indicator that my particular cancer cells were cranking out Tg at quite a clip. There are two things that "good" thyroid cancers do: first, they uptake iodine, so RAI can kill them off. Second, and nearly as important, they produce Tg, so we can keep track of them via a simple blood test. It would seem that my cancer is very well-behaved, considering. (end update)

Soooo, if Tg stays the same or goes up, then what? Well, I had a salivary gland targeted as suspect right after my surgery. My PCP, upon exam, ordered an ultrasound, and when that came back he wanted to do a CT scan. But that was postponed because I was going for the RAI and the WBS. The gland is definitely still somewhat enlarged and odd-feeling. Dr M suggests that if Tg does not drop, a CT scan of the gland will be in order. If done right away that would give 2+ months for the iodine from the contrast to be flushed from my system. That may not be long enough. Maybe they can do a scan without the iodine? Here's hoping I won't need it.

I'm set up for an appointment at the beginning of May to schedule my thyrogen WBS -- the follow-up scan, sometime in mid-May. I asked if we would have any indication before the scan as to whether or not further treatment would be necessary. She said that Tg levels could tell us beforehand that something should be done -- just not what (RAI, or surgery.) The scan would tell us that. She also stressed that having undetectable Tg does not mean that I won't require further treatment. Still, one can always hope.

The good news, though, is that if any necessary treatment would interfere with our vacation plans, it can wait until August when we get back.

I asked about my voice stamina, and she said to give it a good 6 months and then see an ENT for evaluation if it is still giving out on me. She did say it would probably strengthen over time, but I will be dealing with scar tissue forever. "Your surgery was quite extensive," she said.

She was flipping through the path report and snorted. "There was no cancer in your nodule!" Yes, that was quite annoying. She did the FNA and took great samples but of course the cancer didn't show up because it was everywhere except in the nodule!

Yes, sometimes I do have the impression I am being toyed with. Why do you ask?

We talked about other stuff, too, like calcium levels (up 2000 mg/day is OK, but no more), and other things I can't remember. I am not inspired to go get my notes, either. Yes, I brought my notebook with me as I didn't want to forget any of my questions. I must be doing better to be able to remember all this stuff at this time of the day.

The bottom line is a new level of medications and another 6 weeks of waiting before I know anything. Maybe I can start getting some things done around here.