TT 8 days ago...RAI treatment ?'s

[swenger]

I just had a total thyroidectomy 8 days ago~doing well but I have a lot of questions regarding the RAI treatment that I may need to have within the month. I meet with an oncologist Monday. My surgeon told me that he will be the one to determine if I will need to have the RAI treatment. I had a 1.1 cm mass that was diagnosed as papillary thyroid cancer. I am reading these horror stories on here with terrible side effects of the RAI treatment and am wondering if I want to go through all of this or not. I am just worried that if I don't have the treatment that I will regret it down the road due to the cancer recurring. Do they do the scan before or after the RAI treatment?

[swenger]

I am so glad to hear you are doing well, and I hope that your new symptoms will subside as time progresses. I did not have to have the RAI treatment at this time, due to the size of the mass, the fact that it had not gone outside of my thyroid at all. I go back in mid April to have blood work to test for any tissue changes. I started Tuesday on my meds and the symptoms are already disappearing. I am feeling very agitated at times and a bit restless or nervous...maybe the meds are too much. I will give it some time and see how things play out.

[karmazrevenge]

Definitely sounds like you are getting more hypo. Like I said, hang in there. I am now 1 week out from RAI and doing ok. I have noticed that my sense of taste is "off" but it comes and goes. Weirdest thing is I have a salty taste in my mouth constantly, but foods that are salty (like chips) taste bland and terrible. Don't know what that's about!!  The synthroid is kicking in and my hypo symptoms get better everyday (Thank Goodness). I believe the dose of radioiodine they gave me was 100 microcules. If you need someone to talk to about your hypo symptoms, or anything at all, please know that I'm here for you. I couldn't have made it through without the wonderful people in this forum!

[swenger]

Thanks so much for letting me know how you are tolerating the treatment! I am glad to hear that you are doing so well! What was the dosage that you were given? I am having some irritable symptoms the last few days. Super cold skin, but sweating episodes. Going to buy some Cuddle Duds today to wear to work on Monday. Also, feels like I have weights on my arms which makes it hard to get hair blown dry, curled and face put on! Please keep me posted!

[karmazrevenge]

Hi again. So I had my RAI yesterday and I have to say it hasn't been a big deal at all so far. I'm chewing lots of gum, sucking hard candies and drinking a lot and haven't noticed any difference from before the pill. I wasn't allowed to eat or drink anything for 6 hours before the pill and had to wait 2 hours to eat after taking it but they let me drink as much as I wanted right after. The isolation isn't bad either...3 foot distance is all I have to observe and flushing twice when I void. Of course hand washing is super important. My husband slept in our guest room last night but was told he can return to sleeping in our room tonight. My biggest struggle is the hypo...having tons of symptoms and it really *****. As MANmom told me yesterday, I am in hypo hell!!  Hang in there...I think you're going to be just fine

[swenger]

maybe that's why the doc said that the oncologist would discuss with me whether or not I would need the RAI. I just worry that some tissue may have been left and I would hate to have it come back again. Good to hear that you didn't have any side effects from the treatment. I have really worried about some of the more lasting ones, especially the salivary problems. Thanks for your help to this newbie!

[swenger]

Thanks for the post! Good luck today and that would be fantastic if you would keep me posted!

[MANmom]

Usually they don't do RAI unless your tumor was at least 1.5 cm...between 1.0 and 1.5, they decide on a case by case basis.  If you have had no spread, if it was all encapsulated and no lymph node involvement, I believe you have a choice not to have it.  I had no ill effects from RAI, except that I lost my sense of taste for a month, but it came back.  No other side effects whatsoever.

[karmazrevenge]

I am having my RAI today, so I'll be happy to keep you posted. They do a "mini" scan first, then a week later you take the big dose (what I'm doing today) and next week friday I'll have my total body scan. Have to keep isolated from people for next 3 days and stay on low iodine diet for a few days more. Biggest side effect concern I have is ending up with a blocked salivary gland in my mouth. I'm dry enough being so hypo!  Hope this helps