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521grammy 03-11-2007 05:05 PM

Facing Surgery for Papillary Thyroid Cancer
I am looking for someone who has had a total thyroidectomy because of papillary thyroid cancer and followed up with radioactive iodine treatment. I am having surgery on the 19th of March. How long was your recuperation from surgery? How long did you wait to do radioactive iodine treatment? How did you body tolerate the treatment?

Thanks for your time.


Tinkerbell16 03-11-2007 05:17 PM

Re: Facing Surgery for Papillary Thyroid Cancer
I can't help with the cancer part, but I just had my TT on Feb 28th.
The first 6 hours after surgery were rough for me, I got sick from the anestesia and my neck muscles were sore. By the next morning I was fine. I showered when I got home, was able to sleep really well. I drove on the 3 rd day after surgery. ( I was not taking pain meds)
So the surgery was pretty easy.
Hopefully someone else can fill you in on the RAI part:)

Reece 03-11-2007 06:38 PM

Re: Facing Surgery for Papillary Thyroid Cancer
I went thru. the same thing as you 2 years ago. I had a positive FNA for pappillary thyroid cancer, a total thyroidectomy. That was an overnight in the hospital for me, I was walking around within 2 hours after surgery, went to a family event two days later. I had an achey throat, didn't need painkillers. I didn't have real pain --- just a tight feeling.

I didn't take any medication (should have insisted on cytomel until 2 weeks before RAI) and went too hypo for too long---5-6 weeks, when the whole thing should have taken 3-4 weeks---paperwork screw ups and miscommunications. There are many who are on cytomel and function very well all the way thru. I functioned---drove, worked out of the house, etc., but I was really very lethargic by week 4.5.

I had a very large dose of RAI (175 mci--most have up to 150), stayed away from my kids for a week, then went on medication after 3 days, and it took a few months to regulate the medication to where I felt completely normal, and now I feel just fine.

I know how horrid it is to know you have cancer, but this does not behave like other cancers, it's slow growing and it's curable.....and a positive outlook on this goes a long way.....I did very will too.

marie15 03-11-2007 06:38 PM

Re: Facing Surgery for Papillary Thyroid Cancer
HI, I just had half my thyroid taken out because of the same type of cancer. The only thing was they found the cancer after. I am now waiting to see what the next step is. Anyway the recovery is really not that bad. The first night I stayed in the hospital and had a hard time swallowing. It felt like a really bad cold in my throat. The next few days were not that bad and I went back to work after two weeks. From what I have been learning the RAI must be two months after your surgery. Good luck It is not that bad

521grammy 03-12-2007 12:36 PM

Re: Facing Surgery for Papillary Thyroid Cancer
Thanks for all the information! It was very helpful!

521grammy 03-12-2007 12:42 PM

Re: Facing Surgery for Papillary Thyroid Cancer
Reece: Were you sick during the week that you had to stay away from your kids? My doctor said the RAI might make me sick but I would not lose my hair.

Thanks again for the info.

521grammy 03-12-2007 12:50 PM

Re: Facing Surgery for Papillary Thyroid Cancer
Marie15: Thanks for the information. I hope to be back at work in 1 week, but I'll wait and see how I do. My doctor said the RAI treatment would be approx. 4 to 6 weeks after surgery. I hope you learn what your next step is soon. For me, waiting to hear from doctors and their staff is the hardest part. Fortunately, I have a couple of doctors who communicate with me through e-mail. That is very helpful. Good luck to you!

Reece 03-12-2007 02:32 PM

Re: Facing Surgery for Papillary Thyroid Cancer
NO, no, RAI didn't make me sick, I had some swelling around my neck, but No sickness..I stayed away from the kids for their safety, I was extra cautious...but I felt terrible because I was sooooo hypo.---I was very lethargic from no thyroid hormone for so long.

You don't lose hair from the pill, some pp. get nauseas after taking the pill, but I didn't.

aussie_girl 03-14-2007 07:59 PM

Re: Facing Surgery for Papillary Thyroid Cancer
hi there, i had a total thyroidectomy last november for papillary cancer. I went in on a monday morning and came out the wednesday afternoon. i also had one parathyroid taken out they didnt tell me why but i suffered bad low calcium problems after and am still having these problems and was back in hospital a week later for another 4 days because of it. thats bascially the only side effect i had, i was back driving a week later just was a bit uncomfortable to turn my neck for a few weeks but no real pain. i had the RAI treatment in feburary, went in on monday and was out wednesday. stayed away from my son for an extra 3 days, but have had no side effects from that was not nauseous or anything just got sick of the hospital food being on a low iodine diet. felt bad for a week or too after with headaches and stuff from the thyroid medication not kicking in yet but its finally starting to get better. i am now taking vitamin d , calcium, and magnesium supplements daily as well as the thyroid meds. my scar is probably about 2 inches across but is barely noticeable. hope this helps.

nancye2 04-12-2007 11:16 AM

Re: Facing Surgery for Papillary Thyroid Cancer
I had a complete Thyroidectomy on the 27th of March and was hospitalized overnight. On the way home, I got very nauseated and continued being very sick :dizzy: through the night and into the next day. It is hard to say how much of the dry heaving caused my throat to be so sore as compared to the surgery. That was followed by ulcers in my throat and mouth which the Dr. thought may have been from the bile and stomach acid. I had a pretty rough time for about a week. I felt good the following week and started the low iodine diet one week after surgery. I have not felt real good since then. I feel weak and tired...but worst of all I feel very unstable when I make moves (sit to stand; lying to standing:, etc) It is a hard to describe the feeling. I am on high blood pressure meds and my pressure is running high so this may be a part of that feeling. I am to stay on the low iodine diet until the RAI which is sometime the first of May. I get blood work on 30th of April and next appointment with Endo is 3th of May. Has anyone else had to go that long before receiving the thyroid supplemental treatment? My Dr. told me I would get very tired and would be begging him to give me something but that would not happen until after the RAI. Any feedback is appreciated.

Reece 04-12-2007 03:12 PM

Re: Facing Surgery for Papillary Thyroid Cancer

You might want to consider creating your own post with your question to make it easier to find.

You are very very hypo. now, and that's why you don't feel good. I went 5-6 weeks before RAI, and started to feel bad somewhere around week 4. You could have been on cytomel (a short acting thyroid drug that leaves your system quickly) during this time, (don't worry, I wasn't either), and you would have been getting thru. this easier.

You might even call up the endo. and ask if you can have some for this coming week, you usually have to be off it 2-3 weeks before RAI.

HANG IN! I know it's hard, this will be over soon!

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