# more waiting...help :(



## sophie.j (Sep 1, 2012)

i have to wait until the 27th of september to find out what they've decided is the best treatment for me

(for those who don't know, i had partial thyroidectomy nearly 3 weeks ago and results came back as papillary cancer)

i feel like i can't concentrate on anything and im so fidgety !! just want to know whats going to happen now 

i was also wondering if someone could explain to me, if i have a TT or RAI, will both of these mean that i am on meds for life?

thank you x


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## Andros (Aug 26, 2009)

sophie.j said:


> i have to wait until the 27th of september to find out what they've decided is the best treatment for me
> 
> (for those who don't know, i had partial thyroidectomy nearly 3 weeks ago and results came back as papillary cancer)
> 
> ...


Yes; you will take thyroxine replacement. There is truly nothing to it. The med will have to be titrated until you feel good but after that, you should be good to go.

Better than ever actually!

That is a long wait; I feel for you!


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## adagio (Jun 25, 2012)

Sophie!!!! I'm so sorry to hear that it ended up being cancer! 

My second cousin ended up having cancer, and she's a year out. She's doing great after her TT and RAI! My ballet teacher also had a TT (no cancer, no RAI), and she's doing great as well. It may take a little time, but once you get the replacement dosage figured out, you're gonna be just fine. (_And _you're awesome 'cuz you're kicking cancer in the rear!)

Hang in there, girlie! I'm still waiting for the remainder of my thyroid to balance itself out, so I know the process isn't easy. YOU are gonna do great!!!!!!

I'm waiting to hear you, a few months from now, say something like, "Check me out - I'm awesome!"

Hugs for you!!!! :hugs:


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## Octavia (Aug 1, 2011)

Unfortunately, with thyroid issues, there's a lot of waiting. Then more waiting.

Yes, if you have a TT, you will take a little pill each day. It's not bad.


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## sophie.j (Sep 1, 2012)

thanks everyone  i just want it all over and done with so i can focus on everything else!

so just to clarify, meds for TT but not for RAI? CONFUSED!!

also, has anyone else experienced shortness of breath post op? im finding breathing a bit difficult at times..walking and talking at the same time is strangely difficult! im organising a charity bike ride too , which is a week on saturday. i went out on my bike today (granted i rarely exercise other than horse riding) for about 10 minutes and im KNACKERED! found breathing really difficult. 
x


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## joplin1975 (Jul 21, 2011)

Meds for either RAI or TT -- in either case, it's the destruction or ablation of your thyroid, so you will need meds.

You are not on replacement meds now, right? I bet that's what you are feeling with shortness of breath etc. Your body is just having a hard time keeping up.


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## sophie.j (Sep 1, 2012)

nope not on any replacement meds at all. i have lost 5 pounds?! the doc said this was nothing to do with my operation. just seems a bit too coincidental to me


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## sophie.j (Sep 1, 2012)

voice still not normal yet either, cant raise my voice or sing


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## Octavia (Aug 1, 2011)

Sophie, you might be confused because there are different uses for RAI.

The RAI we post-cancer patients get is RAI treatment dose, generally 100 millicuries or higher, to kill off any remaining thyroid cells after a total thyroidectomy (it's not a perfectly clean surgery, so there are probably going to be cells left behind).

Then there's a "scanning dose" of RAI, generally less than 5 millicuries, which is just enough to be absorbed by rogue thyroid cells that seem to be stubborn. For example, this is what I just had for my one-year post-cancer body scan. My scan was clean, but if it wasn't, that would have meant that I had some thyroid (cancer) cells lingering in my body, at which point, I would have needed another treatment dose.

And then there's a dose of RAI given to Graves patients to kill off some of their thyroid, in an effort to make them not hyperthyroid anymore. I don't know those doses. I would imagine that once in a blue moon, the patient lucks out and gets the exact dose that kills the exact amount of thyroid cells to make them euthyroid (the right level) without meds.


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## Octavia (Aug 1, 2011)

sophie.j said:


> voice still not normal yet either, cant raise my voice or sing


It took a good 3 or 4 months before I could raise my voice after surgery. I still can't sing well...but that has nothing to do with surgery.


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## sophie.j (Sep 1, 2012)

Octavia said:


> It took a good 3 or 4 months before I could raise my voice after surgery. I still can't sing well...but that has nothing to do with surgery.


Haha!

So, im assuming i would be having RAI treatment unless they give me a TT too then?


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## jenny v (May 6, 2012)

Usually the treatment in the U.S. for thyroid cancer is a total thyroidectomy and then an RAI treatment. So, both, technically. One removes the majority of the thyroid and then the RAI kills off any remaining tissue that might have been left behind after the surgery.


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## Octavia (Aug 1, 2011)

sophie.j said:


> Haha!
> 
> So, im assuming i would be having RAI treatment unless they give me a TT too then?


I had both. I had the completion thyroidectomy (to take out the remaining half), then RAI treatment.

Generally, the protocol includes both, unless the cancer is very, very small (a microcarcinoma...a millimeter or two, give or take).


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## joplin1975 (Jul 21, 2011)

Yes, I'd also assume you'd have both.


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## sophie.j (Sep 1, 2012)

getting very nervous for thursday!! any advice if they suggest just having regular scans?


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