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A Rare Case Of Papillary Cancer.,,,.and Want To Know About My Disease?

Learn about Thyroid Cancer

A Rare Case Of Papillary Cancer.,,,.and Want To Know About My Disease?

Postby Primo » Fri Sep 22, 2017 8:27 pm

two times I-131 has taken 1st time 125mCi n then 150mCi and then after 1 year thyroid scan was 100%clear but still TG level was very high by a value of 134ng\mL then another scan MIBI-whole body scan was done n after that PETCT scan was done but they both were also clear.after that Dr suggested us to take another I-131 ablation treatment n which 165 MCI was given n then after 8 days Therapeutic scan of whole body was done which was also clear now what should we do???why the TG level is so much high when my all the scans are clear???is this a unique case??now what should the next step to be?

2 days ago - 6 days left to answer.

IS IT NECESSARY IN SUCH CASE THAT THE TG LEVEL IS HIGH DUE TO CANCER????WHAT IS THE SURVIVAL RATE OF MY DISEASE??REPLY SOON PLZZZZ

23 hours ago
Primo
 
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A Rare Case Of Papillary Cancer.,,,.and Want To Know About My Disease?

Postby Nevan » Fri Sep 22, 2017 8:28 pm

Firstly, has your thyroglobulin ever been undetectable?? Thyroglobulin is a protein only produced by thyroid cells, so a sudden increase usually means a recurrence/ metastatic cancer.
If your whole body scan shows nothing but your thyroglobulin is elevated, that very well might indicate your cancer is not responding to iodine = non-iodine avid.
That situation is not rare, it does happen in some patients. You just had your 3rd RAI treatment totaling your lifetime exposure at 440 mCi.
I would hold off getting another ablation if the doctors suggest (get another opinion if they do), they start worrying about side effects (increased risk of Leukemia) at 500-600 mCi.


Was the PET/CT scan done with a radioactive iodine tracer? If so, that could be the reason why it didn't show anything.
Going along with my theory that you are non-iodine avid, a FDG (Fludeoxyglucose) PET or CT usually shows where the cancer is.
I would highly suggest you get a second and third opinion.
MD Anderson in Houston Texas, Mayo Clinic in Minnesota and Memorial Sloan Kettering in New York all deal with cases like yours.

Edit: Mayo is the only place that does percutaneous ethanol ablation which can be used for recurrent thyroid cancer.
Nevan
 
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A Rare Case Of Papillary Cancer.,,,.and Want To Know About My Disease?

Postby Crowley » Fri Sep 22, 2017 9:15 pm

I would second the suggestion to seek help at MD Anderson or Sloan-Kettering. Not so sure about Mayo.

You might want to visit the THYCA.org website for more information.
Crowley
 
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