Palatable and Piecemeal

Today Joshua and I met with my endocrinologist to talk about radioactive iodine treatment. My providers have been great. They are kind, engaged, and positive. But today I feel heavy. Since the first time I brought up my enlarged thyroid with my primary care physician, the theme of all of my interactions with all of my different doctors has been: "You have nothing to worry about!" Today was more of the same, except now I'm treating thyroid cancer and about to make a foray into the world of nuclear medicine. The cheery "everything is going to be fine!" perspective is starting to feel incongruent with my experience, since I have heard that since day one yet at every turn end up being on the wrong end of the statistic spectrum. I am staying positive overall, but today was just a rougher day.

My endocrinologist shared with me the dosage she has chosen for my treatment based on the pathology report. Right now it is at the highest end of the "moderate" dosage range; she will do a localized scan of the thyroid bed just before the treatment and hopefully that does not change her mind on the dosage because more radiation than what she has already prescribed ventures into "increased chance of developing leukemia" territory. Other than that, she has limited knowledge of nuclear medicine and could not provide many details about what the experience will be like. It's all piecemeal; everyone is specialized for their particular part of this process and cannot speak to what the other doctors do. Not that I would want them to be advising me outside of their specialty-- it's just frustrating to take this process one little breadcrumb at a time. But that may be a larger metaphor for life and my control issues. ;) I'm a planner to the max and find it difficult to plan without being able to visualize the whole process and its contingencies.

She strongly recommended that I use recombinant thyroid stimulating hormone (TSH) in preparation for the RAI instead of withdrawing off of my medication for weeks prior to the treatment. Before RAI, your thyroid cells (or what is left of them, in my case) should be as stimulated as possible. So you can either do this "naturally" by withholding thyroid hormone (in my case, levothyroxine) from your body-- which forces your pituitary gland to send out increasingly desperate messages to the body that it needs more-- and your TSH level rises and rises, trying to get your body to fix the problem... or you can use the drug to force an elevated TSH. The big caveat to using the med withdrawal method is that the higher your TSH level gets, the more the cancer will grow, which is not something you would necessarily want to foster over a four to six week period when you could spend two days injecting yourself with synthetic TSH to get to the same goal level. Another benefit of this is that I don't have to spend weeks feeling terrible becoming severely hypothyroid. I am generally leery of shortcut methods, but this seems to be well-researched and without side effects, so count me in.

After the treatment I will have to be away from my children for three days. Five days after the treatment, I will have a whole-body scan to see where I "light up" (a.k.a. where the cancer has been). They use the radiation that is preexisting in your body from the RAI instead of giving you more for the scan. Josh asked the doctor how it's possible for me to still be radioactive enough for it to show up on a whole-body scan as a diagnostic tool and yet safe for me to return as my children's primary caregiver two days prior to that. She thought that was a good question but didn't know the answer. I guess we will have to trust Nuclear Medicine on that one. The five-day-post-RAI scan won't tell us whether the treatment worked, only where cancer has been. I have to wait several more weeks afterward to take a blood test to see what my thyroglobulin levels are... this tells the doctor whether or not there are still thyroid cells (cancerous ones) trying to make a comeback. If the level is not zero or close to it, that means the treatment didn't get all the bad guys. In which case we would be looking at round two of treatment. We didn't go down that road; she was optimistic that this punch of radiation would do the trick. 

So overall, a positive visit. We will schedule my RAI for sometime in August or September at the latest. I do have to be on a quite restrictive low-iodine diet for two weeks before the treatment. I am considering going radioactive on my birthday. That would be a memorable one!