non avid papillary thyca

How do you know if your cancer is non avid? I've been told the RAI doesn't seem to work for me but have never been told I am "non-avid." I've got bloodwork/ultrasound scheduled for tomorrow but won't see endo until November. Any thoughts??

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Well if I recall through my readings. They say your non avid when you have rising tg could be with antibodies too and you have received RAI prior with a clean WBS. Meaning something is there in the bloodwork but nothin shows on the WBS. If the problem is in the neck they can usually locate it with US. They usually recommend a PET scan. If the pet is positive and WBS scan negative all while tg is elevated, that is a definite non avid patient. Sometimes though even a pet San will not pick up Thyca if its a small amount and they can have false positives too due to Infection or inflammation In the body. It may take several tests and appointments before RAI non avid is a given or it may be very clear From te beginning depending how elevated the tg is after surgery and what the WBS shows

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I believe the pathology might also come into play here. If the cells were "well differentiated" that means they mimic actual thyroid tissue cells and typically take up iodine. When they are "poorly differentiated" then they look less like thyroid cells and might not be as RAI avid.
Hang in there,
dj

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I've had a TT and mets to lymph nodes. I've done two rounds of RAI and was told after the 2nd one that it looks like it "doesn't work for me." 2nd surgery was done after malignant lymph nodes were found by US. Since then (2008), I've had the RAI and several scans including US, WBS, PET/CT all negative but TG creeping up. TGAb - negative.

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I am non avid, it means that when they know the cancer is there and you have a dose of RAI and there is no uptake on the WBS,

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Interesting - because that sound like me, Kazzmo, but I've never heard the term "non-avid" until I visited these message boards. I'm really getting frustrated! Is the outcome worse than being "avid"? Do I have a worse prognosis? Why do they not share this stuff!?

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I am a bit puzzled trying to figure out your history. Could you say what the Tg number history is with date, TSH level at that time, or basically just more info on how much is creeping over how long, and if it was ever zero essentially?

You mention Tg is creeping up so that must be why all the imaging was ordered, sounds all like they are looking real hard for a cause via imaging. You had most of the imaging kinds, so what is left is to question the Tg and see if it is valid while they can't see anything on imaging. That is a long shot, but sometimes Tg can be a funny thing too though perhaps one of the better tools. Just an idea to look at I suppose that I thought I would bring up as an outside set of info to look at.

I think you mention you had US, WBS, PET/CT. Only other imaging left is Spiral CT with contrast which finds tiny stuff in the neck area better than others and is better due to resolution at the tiny stuff than regular CT which you had combined with PET/CT. Just another imaging idea of course, not that you need another....

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I never heard of non avid until these message boards also. My doctors never mentioned it. I guess for most people the RAI works so they don't give u all the info or possibilities but that's just not fair! So I decided to switch to MSK where all they treat is Thyca and they were much more forthcoming with info

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I've been non-avid since my 208mCi dose of RAI that didn't kill anything and right after that I had surgery to remove many, many cancerous lymph nodes... I still have indications of cancer in my upper chest...

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BiomedEE - Here is my TSH/TG history...

10/12/07 2.7 no TG at this time - day of dx
1/3/08 83/437 - off meds in prep for RAI
5/6/08 .1/18
8/19/08 105/273 - off meds in prep for RAI - tracer dose done but recurrent cancer id'd by us/fna/biopsy done earlier same day. Surgery in 9/08.
2/19/09 .1/7.7
8/19/09 3.9/6.5
2/15/10 .08/5.1
10/06/10 .06/8.2 (new doc/now taking Cytomel)
12/10 ??/18.5 off meds in prep for Thyrogen/RAI
3/15/11 .27/4.4 (never been this low)
6/1/11 .02/2.4 (never been this low)
8/23/11 .04/1.9 (what? Think I'm done with this)
11/16/11 .19/4.4 (ok - still not bad)
3/7/12 .38/7.1 (is this gonna continue?)
9/5/12 ?/? US done today, too

Thanks for looking!

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