...everything looks like a nail.
I understand that human nature dictates that we always think that our professional solution is the right one. It doesn't surprise me that my surgeon wants to operate, or that my NucMed doctor wants to give me another round of RAI.
But I have to weigh this factor in deciding what course of treatment I'll follow. And since I'm already in "off label" territory as far as Thyrogen treatment is concerned, I'm not exactly sure where I'm going to end up.
Today I called the NucMed department and got my schedule for my injections, tracer dose, and scan next week. The plan is to get injections on Tuesday and Wednesday, tracer dose Thursday, then the scan Friday.
That all sounds OK, but then the scheduler continued: We'll also treat you on Friday if the scan is positive.
Wait just a minute, there, Missy! What do you mean? First of all, treatment means going into isolation for at least 3 days, and it's not something I can just jump into.
Second, even if the scan is positive, will another round of RAI now be the best way to treat it? In my discussions with my endo, she talked about getting the WBS and then following up with CT or other scans to get good localizations on whatever is there, and then determining a course of treatment.
However, the Thyrogen is short-acting, and if I don't get treated Friday, I will have to go hypo (off thyroid meds for at least 4 weeks) before I could be treated, or I could try to request another round of Thyrogen but it's likely that the insurance company would deny it.
There's also the fact that Thyrogen isn't even commonly used for people who have not yet had a "clean" (that is, cancer-free) scan, and this is my first follow-up and we're about 100% sure that this scan is not going to be clean. This the "off label" usage I mentioned above.
But actually treating me while on Thyrogen stim is even further off-label! The Thyrogen Patient Information Kit (pdf) even says, Your thyroid hormone therapy must also be stopped if your tests show that you need 131I treatment.
I'm sure there are studies out there showing that it can be effective, and I know approval for this usage is something that the drug manufacturers are pursuing, but that doesn't mean I want to be a de facto uncompensated test case.
In addition, I'm not convinced that RAI is the way to go if it's in the lymph system, which is what my first WBS showed: multiple nodes in the neck and chest. At the time of that scan, I had just been nuked with 206 mCi of RAI, and the hope was that the radiation would clean out those nodes and anything else that might be lurking around. On examination at the beginning of May, my endo found at least 3 suspicious nodes in my neck.
Do I think I still have cancer in my nodes? You bet. Do I think the RAI can get it out of there? Honestly, I know there's a chance that it might, but I also know that historically, surgery (or ethanol ablation) is a much more effective method of eliminating cancerous nodes.
If I have RAI next Friday, they won't do anything else to me until the fall, at least 6 months out. On one hand, that could be a good thing as I could enjoy my summer. On the other hand, I have no confidence that further RAI is going to be all I need, so I'll just have surgery hanging over my head if they do the RAI now -- and the Thyrogen-stim RAI treatment still has me shaking my head. What to do, what to do?
No decisions can be made until after the scan, obviously. But I'm not going blindly into an off-label, less-than-effective treatment just because my NucMed doctor has a hammer and sees my thyca as a nail.
1 comment:
i can so relate to this entire part of your blog. im over drs making decisions for me before i have the chance to just sit and THINK i am due my thyrogen treatment in two weeks and are on the dreaded low iodine diet. Im glad i found you blog as i too have has lymph node cancer and have had a lymph node disection. My sisters endo told her that thyroid cancer doesnt spread. Man I hate drs sometimes
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