Pain in neck 13 years after Total thyroidectomy

sashahope

Hello,

So I am having a total body scan soon because my TG was on an uptick. I have antibodies so the actual Tg nubers are probably higher than they showed in the test. I did not get it done in Dr Carol spencers lab.

 

My family history is that both my mother and my grandmother died from thyroid cancer, papillary with ATC. My diagnosis and surgery was in 2003 and grandmother passed in 2001 and mother in 2008.

After my total thyroidectory with about 40 lymph nodes removed and 150 mci of RAI, I still had pain on my trachea. But they said it was inflammation. But the pain has persisted. It gets worse when I eat anything with sugar and now is almost constant. 

My suspicion is that it is ATC because my mother and grandmother both had similar pain. I want them to do a scan to rule it out or confirm it so it can be treated. I have to be proactive because I have a little daughter and am a single mom. 

How long after RAI scan they can do a PET scan. Is a PET scan the conclusive way to diagnose ATC ?

My fear is that similar to my mother and grandmom I will show uptake of RAI but that it will also have ATC cells or de-differentiated cells that are going to be missed. Is there anything I can do to ascertain that they test me for this ?

It almost feels like a pulsating scab on my windpipe that I feel like removing manually!