AR .. that makes sense .. thanks for answering .. I wanted to respond that I had a partial and they found small incidental findings of pap ca which was non invasive and no lymph node in 1/07. We are here for you as you may have ups and downs before RAI, during, after and then regulating the right dosing.
WELCOME to the community and I'm glad they got it all and early!!
Welcome to the double smile club!! :-)) Everyone is different as far as when the symptoms will come and what they will be. For me personally, I didn't get Cytomel. I had my TT, then went without meds for 7 weeks. Between week 3 and 4, I started feeling nasty. And it only went from bad to worse, until after my RAI when I could start the meds. That's why they call it hypohe\\! It took about a week on the meds before I felt human again.
I don't know if you'll feel all that bad with the Cytomel, though. My biggest complaint was nausea. It was horrible! If I knew then what I know now, I would have called on day one of feeling it to get anti-nausea meds. Instead, I thought I could tough it out and waited about a week and a half. NEVER would I do that again!
Cytomel only after TT is normal and what my doc had me do pre-RAI. AR is totally correct. If you are going to do the RAI it's the only drug you should be taking at the moment. Any T4 drugs would put off the RAI by weeks and weeks. And you SHOULD DO THE RAI!
At one point last year, I was of the same mind as you. My thinking: "Hey, the cancer was small, and encapsulated, and it hadn't spread..., why should I go through all of that?" My docs "almost" agreed with me... But... there is always a chance it could come back... Albeit a small one, but not worth the risk, AT ALL!
Yes it's a pain, and yes hypohe// (if you don't have Thyrogen injections) is no fun, but I know I have a better chance of never having that "re-occurance". And to me that's called "peace of mind."
Whether or not you choose Thyrogen injections or not is between you and your doctor, but do the RAI. You can start the T4 meds a few days after RAI and get on with the rest of your cancer-free life. Good luck. Welcome to the forum.
How big was the tumor? Size, encapsulation and some other things play into the protocol for RAI or not ..
The Double Smile Club .. I'm going to see if somebody can bring us back up to date on that one ! We say that after you have had surgery (one smile and then Ca Dx -- the other smile) and it looks like this ..
Thyrogen, although approved for RAI cancer treatments, was not recommend by my doc for the "first" round of RAI. He felt that going hypo facilitated the best RAI uptake and therefore the best possible outcome (no more cancer).
In hindsight, hypo wasn't so bad. Ok, so when you're in the last few days it really *****, but in the big scheme of things, it's a small blip. Nausea was the least of my issues until after RAI about three days and there are anti-nausea drugs.
I'm coming up on my 1-year scan, so I'll tell you how the thyrogen shots work, once I know.... And I hate do quote Nike, but "Just do it!" :-))
I had the hypohell for the first RAI and, it lived up to its name. At the time the thyrogen was not FDA approved for the treatment dose of RAI and my hospital wouldn't do a treatment without going through the entire hypohell.
My followup scan, last year, was with the thyrogen shots and it was a world of difference! No depression, no extreme fatigue and coldness, didn't even feel it.
However, for the first RAI I would err on the side of caution and go through the hypohell just to make sure that they got it all.
Glad you did so well GoofyDad and nice to see you on this site again!!!
I agree with everything pep said regarding RAI. I think you should probably have it too, because it's nearly impossible for the surgeon to remove every bit of thyroid tissue. The RAI will take care of what's left over.
I am coming up on my yearly scan as well, and will have the thyrogen shots. I'm very thankful for that, because hypohe\\ was just plain nasty!! Don't be afraid to ask for the anti-nausea meds if it hits you. Because it only gets worse the more hypo you get. I guess I was thinking I may have had a stomach bug or something, and it would go away. It just got progressively worse. It was explained to me that when you're hypo, everything slows down - including your digestion. I guess that's the reason for the nausea.
Like I said, everyone is different though. If you look up the symptoms of being hypo - there is a long list. I had a lot of them, but not all.
Keep us posted as to how you're doing! I'm glad the TT went so well for you.
Thanks again eveyone. Chitchat - my recollection is that the nodule was 2.5 cm, soft, and not integrated into the thyroid tissue. This was from the US - I will have to see about getting a pathology report now that it''s out.
IIIIEEEE KARUMBA - A one-year scan? This is the first I've heard of that. The hits just keep comming, don't they :)
Eeegads! I'm about to see a surgeon on the 30th of September as my latest biopsy came back with atypical cells, so they tell me that the next step is surgery. Having seen here what others have gone through and what the possible next "steps" are.....I'm now freaking out! (Not that I wasn't before already). YIKES!!! On US, the nodule they are concerned about (multinodular goiter) is 2.2 cms.
GoofyDad, how long were you in the hospital and how was the surgery? Sorry, I didn't see your original posts concering this. Did your biopsy come back with malignant cells to begin with?
Welcome to the world of thyroid cancer survivors!! You will more than likely be getting a whole body scan every year for five years to check for recurrence. They don't mess around, and I'm glad for that.
I had a fluid filled nodule they were confident would not be cancerous. They told me to expect an inconclusive biopsy report, and we would drop it from there. The report came back 'consistent with a diagnosis of papillary cancer'.
Surgery was Wed morning and I was home Thursday at noon. No real issues to speak of and I was ready to head home when I did. I watered the garden and took a nap. Now Sunday, I'm feeling fine and ready to resume normal activities.
The worst has been neck and shoulder pain from whatever contortions they put me through on the table. I haven't felt like this since that episode with Elke, the Icelandic gymnast I met on an overnight flight from Helsinki. But that's another story for another time....
Best of luck to you. Try not to sweat the surgery, Mine was surprisingly easy.
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