Tall cell version

Hi Gold Finch 

I don't have any experience with this variant of thyroid cancer but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be easier for group members to see it.

I am surprised that it is so rare @Gold Finch as you know I also have 60% Tall Cell variant which is more aggressive and the reason I believe it is spreading even after 2 rounds of RAI, however, it seems I am RAI resistant after the the second dose, the first one my thyroid region was lit up very well so that one worked, but the second time was to try and reach my lung and a high dose, but it didn't and the nodule has increased in size again which is very disappointing.  What kind of follow up/treatment are you undergoing for this variant?

Hello Petal66

i had RAI in May 22 and then again in January 23 as they found more cancer during an ultrasound last November.  In June 23 I had a clear ultrasound but they’ve said  that I’m to take nothing for granted. I have an ultrasound scheduled for December 18.  Fingers crossed. 

Fingers crossed with you for your next US in December, let me know how you go on x

Hi there gold finch and petal66 

I have tall cell variant too.

How are you guys doing? 

How was the December scan?

I understand it is common to be Rai resistant. And it can be more aggressive. But not found much other info.

I had a total Thyroidectomy and left neck dissection in 2022.

Then 2 RAIs. No take up on 2nd one in Feb 23.

Thyroglobulin is rising so I've been having scans to see if they can see why. Nothing found so far.

I'm due a call today with the results of a PET scan.

Please do share your experiences of tall cell.

Xxx

Hello Nej2021

Thanks for getting touch.

 I’m fine at the moment,.  My scan was clear in December.  I will be having another one in May or June plus bloods of course - I’ve a telephone appointment with my oncologist on June 19th.  I’m hoping it’s fine but of course I’m aware that the tall cells are more aggressive than the usual ones.  I have 50% tall cells.  What about you? 
My husband has a rare advanced  bowel cancer so I’m afraid I tend to forget about my own situation as his is much more intense - after 4 years we are now at the last possible treatment. 

Dear Goldfinch 

Glad your recent tests were ok.

I had  bowel cancer too. I was fortunate though and only needed surgery. I do feel for you and your husband though  I have a friend on immunotherapy at the mo and I do fear for her if it doesn't work. Praying for both of them it does put my situation into perspective!The pet scan showed a lymph node they can't biopsy lighting up and another 2 on the side that was disec. So they want to operate! Rai ruled out as last one didn't do anything.

Now I am waiting for an appointment with one of the surgeons that did my TT and neck dissection.

I'm a bit in shock. I Had to tell work, who like me thought it was over! !! The best cancer!!!

But here we go again! 

Ive had  bowel cancer too. I was fortunate though and only needed surgery. I do feel for you and your husband it's awful  I have a friend on immunotherapy at the mo and I do fear for her if it doesn't work. Praying for both of them

iTruthfully it does put my situation into perspective!

Hi

Im sorry you’ve a recurrence, it does seem to be more likely with the tall cells.  More surgery is not what you want to hear, I’m sure. I would absolutely hate it.  They wanted to operate on me when they found more cancer at the end of 2022 but then the surgeon said he wasn’t sure he would be able to find the small bits so I refused and had a second round of RAI - a stronger dose.  As the next scan approaches I feel more anxious, especially given my husband’s situation.   It would be too much! 

Good luck with the chat with the surgeon, do keep in touch. 

Hello

I'm just wondering how you are now?  
xx

Thanks for asking.

A PET scan found 3 areas of concern. They are all in my neck, so its not moved too far, which is good. So I am booked in for US guided neck surgery on the 17th June. It will be with the same surgeon as before. He did a good job last time I think.

I have just had a holiday in Madeira. It was agreed that I should go and enjoy this before the op. It was a wonderful holiday. I'm also trying to get fit and to loose a little weight so my recovery is as good as possible.

Have you had your scan yet. Hoping all is still clear. 

Hope your husband is doing as well as he can too.

All the best, Jenny