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Avatar universal

Repeat round of RAI?

I had a TT in Feb. 2010 (papillary carcinoma, 1.2 cm tumor on right side) and RAI (101 millicuries) in March 2010.  10 day follow up scan showed uptake in my neck only, on the right side.  They let me see the pictures and the report said I had enlarged lymph nodes on the right side.

I just had my 6 month (Thyrogen stimulated) whole body scan, and the area on the right side of my neck was completely clear.  However, I saw a new spot on my left jaw / cheek area.  Everything else was clear.  The radiologist recommended a PET CT to hopefully rule it out as a salivary gland issue.  I had the PET CT last week and the report didn't say anything about a salivary gland.  It indicated that there is a small (8 mm)spot on my left side, by the suprasternal notch.  This did not show up on the whole body scan (at least it wasn't mentioned in the report.)  I'm no expert with this stuff, but I don't think the suprasternal notch is near my salivary gland. My Tg has been virtually undetectable since the first round of RAI (< .02) and still is at that level. Nevertheless, my endo sent me back to the radiation oncologist for a repeat round of RAI.

I met with the radiation oncologist last week and he said that 15% of his patients need 2 rounds of RAI.  He felt the right side of my neck had so much uptake that all of the other tissue didn't get treated all the way.  Determining the dosage isn't a perfect science, it's probably just leftover thyroid tissue that didn't show up on 10 day scan, etc.  He plans on administering another round (approx. 100 millicuries) on Nov. 29th.  He said that it's no problem to do these treatments within 6 months of each other.

Any recommendations on what I should be doing now in terms of research, more testing, etc.?  The first round of RAI was supposed to be for peace of mind.  Should I get a second opinion and if so, from whom?  Why would the area that lit up on my whole body scan be different from the area that lit up on my PET CT and vice versa?
4 Responses
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97953 tn?1440865392
MEDICAL PROFESSIONAL
Would consider a second opinion.
More RAI at this point may be premature.
Was the post thyrogen Tg level detectable?
The salivary area issue was likely physiologic uptake and not metastatic cancer.
However, if the PET showed something in the SSN area - ultrasound needs to be done to evaluate this.  That brings me to the key point -- are you working with a physician who does ultrasound as part of your thyroid cancer follow-up?  If not, find one.
If there is a lesion on US then FNA biopsy is usually the next step to evaluate it.
My opinion would be to hold on additional RAI based on what you describe.  More RAI is seldom an emergency, so more time and a second opinion may be prudent.
Helpful - 0
Avatar universal
I appreciate your response.  My post Thyrogen Tg was <.02.  I scheduled a follow up appointment today with my endocrinologist for next week to find out if an ultrasound can be ordered.  I'm in Indiana...do you have any recommendations on who to see for a second opinion?

Would the PET scan pick up anything other than thyroid tissue?  I guess my question is, if there is a nodule or something near my SSN do you know why it didn't show up on the WBS?  It is possibly something else that RAI wouldn't affect?

I'm currently off Synthroid and taking Cytomel in preparation for the RAI.  If I hold off on the treatment, am I causing any harm right now in being off Synthroid?
Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
Cytomel for the time being is fine.
The ability of WBS to detect persistent thyroid cancer is about 50% (ie, not very good).
PET scan can detect many different things and is not specific to thyroid tissue.
Sometimes thymus will show up on PET scan (a most often benign finding of remnant immune system tissue in the lower neck/upper chest).
A post thyrogen Tg <0.2 is very re-assuring (assuming negative antibodies).

I don't know anyone personally but here's a link to ATA members in Indiana:
http://www.thyroid.org/patients/specialists.php
Helpful - 0
97953 tn?1440865392
MEDICAL PROFESSIONAL
If you could go to Ohio State University - Dr. Sipos (endocrinologist specializing in thyroid cancer and ultrasound) would be a great choice.
Helpful - 0

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