What a Week

It’s nerve-wrecking to go through the week-long process for a thyroid nuclear whole body scan, but it is even more so during a global pandemic. It was a bizarre week.

I got a call from someone in the Nuclear Medicine Department to ask me if I had any questions and to assure me that the week would proceed despite an order for hospitals to cancel non-mandatory procedures. When I arrived at the hospital Monday morning I found all the entrances closed except one. Of course it was around the other side of the hospital from where I parked. I was questioned, my temperature was taken, and I was given a mask to wear. I found my way through the eerily empty hospital to Nuc. Med.  Once there, I was taken to another part of the hospital for a blood draw (for a pregnancy test). I had to find my way back to the Nuclear Medicine department, which was in another building across the street. All the crosswalks were closed, so I had to exit the building, cross the street, and find the one open entrance again. Once back at Nuc. Med., I was given my first Thyrogen shot after they got my pregnancy test results. I went back Tuesday for my second Thyrogen shot. That visit was a little easier since I was able to park closer to the one open entrance and knew what to expect with the new protocols. On Wednesday, I was not given a mask. They were already running low. I got my tracer dose of radioactive iodine and was on my way.

I got to the hospital at 7:30 AM on Friday. I had 4 scans including the nuclear whole body, a nuclear neck scan, and 2 CT scans. It took about 3 hours. I was given a disc with my scan results to take directly to my endocrinologist. My husband met me at the endocrinologist’s office, but they wouldn’t let him in with me. I was so exhausted and feeling the affects of being off my meds for a week, going through the stress of the scans (not to mention the stress of all the restrictions and changes due to the coronavirus pandemic). My endo went over my scans with another endo in the office and was able to give me results.

The results were unexpected. Nothing showed up on the scans, not even the nodule that had been confirmed with sonogram and biopsy. My endo thinks that indicates that my thyroid cancer is RAI-refractory. It doesn’t uptake the radioactive iodine, so that means RAI is not long a viable option for detecting or treating my thyroid cancer. My doctor tells me not to worry yet. She thinks that the cancer has been there for quite some time (my thyroglobulin levels have never been lower than 5) and that it is localized in my neck. She told me that she will refer me to Duke for a second opinion after my next sonogram in June (right now might not be the best time with the uncertainty of the virus).

I don’t know how to process it all. If the cancer I know is there is not showing up, what else is not showing up? It’s scary to know that RAI is no longer a treatment option. Why didn’t it show up on the CT scan? Is it too small? Could it be too small to uptake enough RAI and that is the reason it didn’t show up? Disappointed that I don’t have answers and that I have to wait longer knowing that there is cancer in my neck that could kill me if it metastasizes. Is “the good cancer” going to kill me!?

I made the mistake of googling RAI-refractory thyroid cancer. It’s really scary to read articles that call people with RAI-refractory thyca as “unfortunate” and that the 10 year survival rate goes down to 10% with metastasis. I can’t deal. I’m shutting down for awhile.

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