Papillary Cancer Tall Cell Variant

I have just had my RAI treatment last week and have been told I have a 60% chance of having Papillary Hurthle Tall Cell Variant.  I had a CT scan with contrast dye at the beginning, following an US and biopsy on a nodule and one lymph node and was told I had Cancer and it was suspected to be in lymph nodes and 2 tiny nodules in my lung.   After my op I was told I had 60 lymph nodes removed from centre and rh side and 14 were cancerous.  The contrast dye does delay RAI treatment by 3/4 months but better they know what they are dealing with because the amount of RAI used will depend on the diagnosis.  My treatment was cancelled for the 7 Dec because of supply issues and was rearranged for the 21 Dec but I was told there was a possibility it might be cancelled again.  It wasn't and I was home for Christmas which was nice.  While I was in hospital the Dosimetrist did say it was good that they had managed to get some of the RAI pills but it was likely there would be more problems after Christmas, so I feel lucky that I have had the treatment after all.  Hopefully by the time you are ready for yours @Willowandpeeps supply issues will have been resolved. 

Thanks for your reply Petal66. It’s great that you have had your RAI. How did you find it? I hope it wasn’t too bad and that you are recovering well. I’m sure you’re right and it’s better that the doctors know what they’re up against before RAI. I just worry about further spread before I can get the treatment. Do you know if the thyroxine stops spread to a certain degree? I feel very new to this. I haven’t had a chance to speak properly to the consultant as he has just gone on holiday for 3 weeks. I found out I had Tall Cell in a rushed phone conversation so I’m not sure what percentage tall cell or anything like that. So many questions spinning around my head… I only had 6 lymph nodes removed during surgery as they had no idea beforehand that it had spread to lymph nodes. I’m wondering now if I may need more surgery to remove more of them. I guess I’ll know more after the CT scan. Best wishes for your continued recovery. 

RAI was fine, just had a couple of days feeling a little nauseous after I got home but nothing bad and they gave me anti sickness pills.  If anything I have slept better, maybe it made me tired.  They do need to know how much RAI to give you @Willowandpeeps, for example I was given a medium dosage and I think it depends on your diagnosis.  Without the CT scan they won't know exactly where or if it has spread, if it hasn't you will only need a low dosage  which is just to mop up any thyroid cells left after your op.  It is impossible for them to remove everything and of course they have to be careful not to damage your Parathyroid glands so makes it even more difficult  and RAI should deal with anything left over.  As far as percentage of tall cell I understand it to mean they don't actually know, and that there is a 60% chance that I have it, but I may not have it if you see what I mean, although 60% is a bit higher than 50/50 chance.  I think it is more complicated in some cases to decipher.  We are just hoping the RAI works and I will know better after my MRI results (I had that on the Friday after my treatments on the Wednesday).  Some people have to return for the scan but my hospital did it while I was there.  Results will be at my next Oncologist appointment which should be soon.  Best wishes to you too and try not to worry, which I know is impossible really because we all do.

Hello

I’m interested to see your post.  We tall cell ones are rare - I was told they only get one per year at my hospital. Mine is 50% tall cell.  I had the TT plus neck dissection on one side in February and the RAI in May.  I had follow up scans recently and they were talking about further surgery but then the surgeon said he wouldn’t be sure he would be able to find the bits to remove anyway!  And there are more risks with second surgery due to scar tissue etc.  and I’m terrified of damage to my voice.  
So I’m hoping to avoid surgery as long as possible and instead am expecting (fingers crossed ) to have a second dose of RAI at the end of this month- the trouble is that the tall cells can be less affected by the treatment.  The thyroxin pills don’t affect the spread of the disease as far as I’m aware.  
It’s all pretty horrible and this is combined with my husband having a rare bowel cancer plus a very recent diagnosis of malignant melanoma.  It’s pretty unbelievable! 
I hope they can do your RAI asap - the supply issue is not something we want to have to worry about!   

Good luck with everything!  Xxx

Hi

I also have tall cell variant of papillary thyroid cancer. I’ve had a hemi then total thyroidectomy followed by RAI in July. I’ll have tests in April to determine how successful treatment has been. When I read about tall cell variant I was very concerned but when I spoke to the consultant she wasn’t worried and said they’d treated many cases so I’m trying to stay calm! 

That’s encouraging if your consultant isn’t worried.   Thank you for sharing this.

I am trying to stay calm too @Marg06 and I had read that not all Tall Cells can take in the Iodine (forget the correct terminology) but I think that related to Hurthle Tall Cell Variant, and now I am doubting whether I have Hurtle Cell or not.  I re-read the letter from the Oncologist to my Doctor and it doesn't mention Hurthle Cell, just Papillary so I am none the wiser, plus when I re-read it it says I have 60% Tall Cell, whereas I am sure I heard her say I had a 60% chance of having it.  I need to ask more questions at my appointment.