I had an ultrasound on my neck on Tuesday.
The doctor that did the ultrasound said:
*The thyroid tissue (the same tissue that was biopsied last August) looks like it is in the scar tissue from my surgery and he wasn't concerned about it.
*With the clear ultrasound and 5 years since my first clear scan (August 2006), I'm probably in remission. (Huh, and I thought I've been in remission since August 2006.)
*To be sure, he recommends doing another body scan. (I've done this before - it would involve going off my thyroid medication, 2 weeks of the iodine-free diet, and then I-131 radiation and I wouldn't be able to be around anyone for a week.)
*If the body scan is clean, then they can adjust my thyroid medication to be at normal levels. Currently, they keep my thyroid medication high enough that my thyroid stimulating hormone is 0.1 or below. Normal levels are 1.0 to 4.0. Side effects of the high medication include anxiety, racing heart, difficulty sleeping -- all things I've definitely experienced. It would be nice not to have the side effects.
*I asked him about the statistic I had read -- 40% chance of recurrence of thyroid cancer within 10 years -- and he said that is true but includes all treatment methods. If I do the body scan - which is what he would recommend - and it comes back clean then he thought I had nothing to worry about.
I really liked the doctor that did the ultrasound, he explained things well. He said he'd send a report to my doctor.
I've been waiting to hear from my doctor. This is the doctor that originally diagnosed and treated me and now, after some insurance changes and a clinic change for him, I'm back with him. I'm surprised I haven't heard from him yet. He should be calling me with lab results and to talk about the ultrasound. I'm supposed to schedule a follow-up with him in January, but I really don't want to wait until then to talk to him.
When I saw my doctor last month, I asked him about the body scan. He said that as long as my labs look good, he didn't think we needed to do the body scan. My last doctor expressed concern about how much radiation I've already had. They've revised the guidelines drastically in the last 5 years and the two doses I had were double the doses they now recommend.
So, my questions for him are:
*What did my labs look like? He's mainly watching the thyroglobulin.
*What are the pros and cons to doing the body scan? He's not recommending it but the doctor that did the ultrasound highly recommended it. Also, when I had my last scan, the radiologist said I would need a scan in 5 years because it was the only way to know for sure.
Wikipedia says: "Some studies have shown that thyroglobulin (Tg) testing combined with neck ultrasound is more productive in finding disease recurrence than full- or whole-body scans (WBS) using radioactive iodine. However, current protocol (in the USA) suggests a small number of clean annual WBS are required before relying on Tg testing plus neck ultrasound."
I like my doctor, but he is the one that told me I had less than a 5% chance of having cancer, so I don't really trust playing the odds. Also, I've been reading online and found several cancer survivors that had the scans 5 years later and their lungs or stomachs lit up on the scans.
*What about adjusting my medication? If I don't have the body scan, will he adjust my medication? If I do have the body scan, will he adjust my medication?