Jan 16, 2010 - 8:00 pm
I just had a PET scan and RAI total body scan for recurrent hurthel cell cancer. My TSH has been elevated for the past three years. Originally, my HCC had metastisized to my right hip. I had surgery to remove the dime-sized lesion, and thought I was past it. However, my TSH level kept rising, and has gone from 15 post surgery, to 29, and when I had my last blood test in November, it was 130. That is extremely high and usually indicates a reoccurance.
So, my docs ordered a PET scan, and a RAI low-dose full body scan so they can compare to see what shows.
Well, my PET showed something very unusual. A spot on the inner curve of my stomach. Now I'm no expert by any means, but I've done enough reseach to know that it is unheard of for HCC to go to the stomach. However, my doctors are thinking in might be a cluster of lymph nodes either behind or attached to my stomach. Certain sites are good hosts for thyroid cells to attach and grow, usually the bones, lungs and lymph nodes, but as far as my doctor knows, he's never heard of it going to the stomach. My scans were clean otherwise.
So, now I find myself in this scary situation. If it isn't HCC, then it could be something worse, like stomach cancer. I don't want to be negative, but there is definitely something there, they just don't know what it is. My doctors are hoping that it is HCC, because if it isn't then they have no idea why my TSH is so high, and I will have another issue to deal with on top of elevated TSH and no known source.
I admit, I freaked out, totally lost it. I wasn't expecting to hear there was something in my stomach. What bothers me is that they saw the same spot back in May when I had another PET scan, but it was really small, and they didn't think it was physiological, so they let it go, and didn't tell me. They said my scan was clean. Now, 10 months later, my TSH is jacked up to 130, and the same spot is showing only bigger.
Now I have to have a CT scan of my stomach, and an endoscopy. Hopefully between both, they can figure out what it is.
I'm a little better now, but I'm still a little scared. I'll know in about two weeks what they find. My CT scan is the 22nd and my endo is Feb. 2nd.
Until then, I'm living on the edge.