High Tg and negative scan

forme

Hi All,
I need some advice. This is my third go round with thy ca. first in 77, then in 95 with mets to nodes. Now I have rising tg and neg scan. I was told that I don't take up iodine. My Tg is now at 32.5. I was told to seek out other opinions at Mayo and MD Anderson. I live in Calif. How can I be treated if the dr cannot find the mets. Any advice would be great.
Thanks,
Lisha

alapah

i also don't take up iodine anymore
my Tg is low, but I have Tg antibodies so that low number has little meaning for me in terms of understanding what is going on. When my Tg rose a bit last spring my endocrinologist sent me to get a tracer dose of RAI and do the whole body scan. When nothing showed on the scan, her next step was to send me for a PET scan and a CT scan. She knew something was up but not where.Turns out I have nodules in my lungs which showed up in the PET/CT scans. I live in Alaska but also go to Mayo (recently consulted with MD Anderson recently for an opinion as well).

You likely need other scans, like a PET and/or CT, but you may want to contact Mayo first, for example, as they might want to do the scans on their equipment. Often, they can read films from other places too. My films from Alaska were not the same resolution as they have at Mayo. They were able to do a reasonable comparison with the previous scans though. For follow up, they say I can continue to have the scans done at home and they'll review them at Mayo for me.

Some great folks at MD Anderson and Mayo. I have a good team at Mayo that I really trust and they all work well with me - very thorough and very informative. Lots of research going on there in regard to thyroid cancer mets.

Hope that helps.
eileen

forme

alapah said:

i also don't take up iodine anymore
my Tg is low, but I have Tg antibodies so that low number has little meaning for me in terms of understanding what is going on. When my Tg rose a bit last spring my endocrinologist sent me to get a tracer dose of RAI and do the whole body scan. When nothing showed on the scan, her next step was to send me for a PET scan and a CT scan. She knew something was up but not where.Turns out I have nodules in my lungs which showed up in the PET/CT scans. I live in Alaska but also go to Mayo (recently consulted with MD Anderson recently for an opinion as well).

You likely need other scans, like a PET and/or CT, but you may want to contact Mayo first, for example, as they might want to do the scans on their equipment. Often, they can read films from other places too. My films from Alaska were not the same resolution as they have at Mayo. They were able to do a reasonable comparison with the previous scans though. For follow up, they say I can continue to have the scans done at home and they'll review them at Mayo for me.

Some great folks at MD Anderson and Mayo. I have a good team at Mayo that I really trust and they all work well with me - very thorough and very informative. Lots of research going on there in regard to thyroid cancer mets.

Hope that helps.
eileen

Thanks
Hi Eileen,
Thanks for the info on Mayo. I did have a pet/ct in Aug, nothing was showing at that time. When I had my WB scan last week, they also did a "mini" ct and still nothing is showing up. I think another pet would be helpful. A lot can change in 3 months. My Thyroid Dr is not to helpful. All she is saying is that I do have cancer, just don't know where it is hiding. I am not wanting to wait for it to become larger, as that brings a new set of problems. One of my Dr mentioned a combo of cisplatin and doxorubicin. Was told that there is some good outcomes using that chemo combo.
Peaceful healing
Lisha