I really want utahmomma ( member here) to give her input. I haven't spoke to her in a while but let me get her on this one.
If anyone else can interject.. please until I can dig more info up.
Thank you for finding info... I should mention she have "invasion" to lymph nodes and vascular as well
Please get your daughter to a good endocrinologist who specializes in thyroid conditions (most don't - you'll have to ask a lot of questions). If you don't have one available, I'd suggest an oncologist.
There aren't "false positives" with the RAI - if there is a large concentration of the radiation it's because either: 1)it hasn't been expelled yet (like in the GI tract or bladder) or 2) there is an area of metastases. There is nothing that should be showing in the thymus. If the cancer had already spread to the lymph and vascular systems there is a good chance it spread to the thymus (the primary lymphoid organ).
Don't let a radiologist lull you into a sense of complacency. Obviously you know there is an issue (or you wouldn't be here). Keep pushing for another doctor. It sounds like she needs a CT scan and maybe a PET scan.
Please keep us posted and PM me any time.
papillary carcinoma '03, second surgery '04, recurrence and RAI '06 (still not gone)
three sisters with papillary carcinoma (one with distant mets and 3 doses of RAI)
another sister and daughter with precancerous thyroid nodules
THank you so much for the information. She does have a endo specialist.. he was quite concerned over the RAI uptake in the thymus gland... and then the Nuclear Dr. said no concerns.. SHE is the expert not the Endo...
I will be speaking with the Endo specialist again on Monday and will be asking for further investigation...
with my daughter only being 14.. I understand the aggressiveness of pediatric thyroid cancer and don't want a "wait" and see approach...
I will keep you updated....