Thyroid Cancer and Thymus involvement

[Ftbllmom14]

My 14 yr old daughter was diagnosed with Papillary carcinoma in May and had a total thyroidectomy in June and then RAI treatment in July... her 1st body scan 1 week after treatment showed uptake in the thyroid bed .. which is normal.... she was sent for another scan yesterday as she is still have some swelling in her face.  The scan showed significant uptake of the radioactive iodine in her thymus gland.  The nuclear medicine dr.said it's fine.. not unusal it is usually a false positive... however, her lymphocytes are quite elevated and she was diagnosed with partial Horners syndrome.. BEFORE her thyroid surgery so the neurologist thought it odd that they did not find any inflammation or tumour in her chest as that is usually the root cause of Horners...

Sooooo... with elevated lymphocytes and large uptake of RAI in they thymus almost a month after treatment.. should I be pushing for further investigation?

Thanks...

[Ftbllmom14]

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....

[utahmomma]

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.


Utah
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

[Ftbllmom14]

Thank you for finding info...  I should mention she have "invasion" to lymph nodes and vascular as well

[stella5349]

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.