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priyagopi · January 2010

Hi

I have been diagnosed with papillar carcinoma, my nodules size is 2cm doctors have suggested me a total thyroidectomy and RAI treatment after the surgery. Can any one please advise me what to expect after the surgery and after how many weeks after the surgery they will start the radioactive iodine treatment.

Any advise in this regard will be very useful

Thanks

leahs25 · January 2010

PO thyroid Cancer
I had my thyroid removed almost two years ago, and had I131 radio active Iodine 6 weeks later. The surgery, like any surgery was painful and I was in bed a week or so, after this is where the removal of your thyroid started to be noticed. I was tired after being out of the house after an hour to two, needed alot of sleep, and had a small apitite. But I started on a cynthetic thyroid right away which helped me, compared with m sister who did not start right away and it took her a lot longer to get her strenght back up.
The radiaition was much more of a shock to me, my dr said it would take a few days, but in reality if was weeks, being off the thyriod hormone and with the radiation, it was not fun. I was fortunate that i did not work during this time, and was able to stay home and rest, and rest and rest.
I would really like to talk with you throughout this process, this is my first time on this site, and i have been really wanting to connect with other people in my same boat, this was a really hard time for me, and i had no one to talk to, no one who could tell me what it was like, what to expext and what was coming next. please feel free to ask all the quesionts you want. I dont have all the answers, but i do have a lot more resources now then i did then, and they might help you feel more prepared

sandykr · January 2010

leahs25 said:
PO thyroid Cancer
I had my thyroid removed almost two years ago, and had I131 radio active Iodine 6 weeks later. The surgery, like any surgery was painful and I was in bed a week or so, after this is where the removal of your thyroid started to be noticed. I was tired after being out of the house after an hour to two, needed alot of sleep, and had a small apitite. But I started on a cynthetic thyroid right away which helped me, compared with m sister who did not start right away and it took her a lot longer to get her strenght back up.
The radiaition was much more of a shock to me, my dr said it would take a few days, but in reality if was weeks, being off the thyriod hormone and with the radiation, it was not fun. I was fortunate that i did not work during this time, and was able to stay home and rest, and rest and rest.
I would really like to talk with you throughout this process, this is my first time on this site, and i have been really wanting to connect with other people in my same boat, this was a really hard time for me, and i had no one to talk to, no one who could tell me what it was like, what to expext and what was coming next. please feel free to ask all the quesionts you want. I dont have all the answers, but i do have a lot more resources now then i did then, and they might help you feel more prepared

Another experience
Just so you can read about different reactions from different people. Keep in mind, everyone is different. I had half of my thyroid out the beginning of september...........after the pathology report (Papillar cancer) I had the other side out the beginning of December. I was put on cytomel 5 days post surgery. Surgery is Surgery and not alot of fun, but aside from my reaction to general anaesthetic, I felt ok. I returned to work in the interim, didn't really feel a big change in my energy level. I do alot of sports, returned to all of them about one week post op.
Then, two and a half weeks before the Radioactive iodine, I was taken off the thyroid replacement. Everyday I would look for side effects...........and basically felt fine. after 2 weeks, I did stop running as I felt like I was wearing lead boots, but swimming was fine.
I had the radioactive iodine this past Monday, and aside from feeling "wiped out" I've been ok, just dying of boredom.....even with books, computer etc. 2 days after the RAI you start taking thyroid hormone so I'm really looking forward to feeling an improvement in energy level etc., but I have been taking walks everyday (alone), and am anxiously awaiting the end of this isolation.
All I can say is so far, so good and once again to stress that everyone is different.
Oh yes, I did gain 2kg in 2 weeks which for me is not normal, but here too, I'm hoping that with taking the Eltroxin, it will get back to normal (and returning to sports).
Next week, they do a full body scan and hopefully all will be well.
Hope that helps

Sandy

leahs25 · January 2010

sandykr said:
Another experience
Just so you can read about different reactions from different people. Keep in mind, everyone is different. I had half of my thyroid out the beginning of september...........after the pathology report (Papillar cancer) I had the other side out the beginning of December. I was put on cytomel 5 days post surgery. Surgery is Surgery and not alot of fun, but aside from my reaction to general anaesthetic, I felt ok. I returned to work in the interim, didn't really feel a big change in my energy level. I do alot of sports, returned to all of them about one week post op.
Then, two and a half weeks before the Radioactive iodine, I was taken off the thyroid replacement. Everyday I would look for side effects...........and basically felt fine. after 2 weeks, I did stop running as I felt like I was wearing lead boots, but swimming was fine.
I had the radioactive iodine this past Monday, and aside from feeling "wiped out" I've been ok, just dying of boredom.....even with books, computer etc. 2 days after the RAI you start taking thyroid hormone so I'm really looking forward to feeling an improvement in energy level etc., but I have been taking walks everyday (alone), and am anxiously awaiting the end of this isolation.
All I can say is so far, so good and once again to stress that everyone is different.
Oh yes, I did gain 2kg in 2 weeks which for me is not normal, but here too, I'm hoping that with taking the Eltroxin, it will get back to normal (and returning to sports).
Next week, they do a full body scan and hopefully all will be well.
Hope that helps

Sandy

Being active
My friend who is a nurse sugested that I start walking again right away, and working my way up to my old work out routine, i think that your comment proves just jow much activity helps you recover, I would recomend that you try to stay active and moving, walking is that all you can muster up, but it helps get your blood flowing, your mood elevated and will help you overall health and recover

Survivor73 · January 2010

information
Hi There. I also had a nodule of 2cm, I had two of them...anyway, I didn't know what it was at first, as the biopsy came back inconclusive. I had my thyroid removed in July 09. (I have 2 sis & one nephew with thy Ca, so I didn't wait)

I was then told that since it hadn't spread, I was cured. I was rather shocked since both my sisters had RAI...I was expecting it as well. I was told that I didn't need it.

I then went to see a endo & was told that I did need it...went back to the surgeon and the Endo he works with and they stated again that I may not need it.

My Dr's (Out of Mt Sanai hospital in Toronto,On) have created a new guideline for when to give RAI. They feel that it is overused and may not be necessary for all patients.
I am T1, but only because of my age...if I was 2 years older, I would be T2 since it was in more than one location, size of 2cm, etc. Mine had not spread to any where else.

Anyway, the surgery was not as bad as my appendicitis last year...you will wake up with a really bad sore throat - it will be awful to drink even water - this is due to a tube being put down your throat & your neck and shoulders will be sore. During the surgery, you have your head put way back so your neck is hyper-extended.

I just acutally left my sister in the hospital tonight - she had her surgery today...this is the 3rd sister to have a thyroidectomy. She doesn't know if her's is cancer or not...with the family history, it's had not to react to having a growth.

Anyway, regarding the RAI...my nephew had it last summer...if you have medical insurance, there is a new drug called thyrogen - if you take it, you don't have to go off your meds and that is the hardest part for the radiation...and of course the diet you have to go on is awful...:)

Anyway, I wish you the best...sorry I can't comment on the time after surgery until you get RAI...I am still waiting to see if I need it or not.

Had the test today to check for my natural thyroid cells left...to see if I need RAI or not.

Best of luck.

1nathaliakarina · January 2010

What to expect
Hi,

Everyone is different on how they recover. I had TT on May of 2009. The surgery went well, besides the pain around the neck area I was ok. I was in bed rest for about one week. I wanted to take it easy for a little bit. Then I was put on Cytomel for about 4 weeks. 2 weeks before RAI I was taken off Cytomel. That was something really awful. Worst than surgery. I felt very tired and always sleeping also I experienced really mad muscle aches. Well I did not go all two weeks before the RAI. I was having what is called a muscle breakdown so I had RAI the next day. The Low Iodine Diet was the worst. I guess you really have to be careful on what you eat. My doses of RAI was 29 mci which was pretty high. I was in isolation for about 5 days and 2 days after RAI I started on Levothyroid 150 mcg. RAI was not that bad. I did feel like throwing up, and having headaches and also I was very tired. But, as time went on my symptoms got better. I am know taking 250 mcg of Levothroid and feeling a lot better. I wish the best of luck to you. Always have faith and remember that you are not alone.

andreapj · January 2010

In October 2009 I had a total thyroidectomy and neck dissection because I had a lot of lymph node involvement. The primary tumor was 2.1 cm.My surgeon also removed 75 lymph nodes (26 were malignant) and transplanted one parathyroid. I asked lots of questions about how extensive the surgery would be and the exact procedures the surgeon was planning. Have you had a fine needle biopsy? Ultrasound will also tell the doctors how involved your disease is. Get copies of all your labs, biopsies, etc. I have a stack of papers with all my records.
Recovery was not fun, but easier than I expected -- it was still surgery, of course, but I have had other surgeries with more pain.Being hypothyroid was miserable but I knew it was temporary. You can mark the days off on your calendar: a prisoner of your thyroid. You may be able to get thyrogen injections if you have no metastasis, and that will prevent the symptoms of being without thyroid hormones. I did okay on the low iodine diet. I like to cook so I made soups and other things in advance, and I make bread all the time anyway(commercial bread is off limits). I had physical therapy for a couple of months and that made a big difference. It reduced pain and increased my range of motion.
There is lots of good information at www.thyca.org -- including a free low iodine cookbook.
I had 154 mCi of radioactive iodine; a pretty good wallop. The dose would have been smaller if my disease were not so advanced. I am stage 4a. Cancers are staged by the TNM system: tumor [size], [lymph] nodes, and metastasis. Thyroid cancer also uses age. The prognosis is better for people younger than 45, and I am 58. Nevertheless, my doctors are optimistic.
Hang in there and post again. Papillary thyroid cancer is the most common of the four types.

andreapj · January 2010

In October 2009 I had a total thyroidectomy and neck dissection because I had a lot of lymph node involvement. The primary tumor was 2.1 cm.My surgeon also removed 75 lymph nodes (26 were malignant) and transplanted one parathyroid. I asked lots of questions about how extensive the surgery would be and the exact procedures the surgeon was planning. Have you had a fine needle biopsy? Ultrasound will also tell the doctors how involved your disease is. Get copies of all your labs, biopsies, etc. I have a stack of papers with all my records.
Recovery was not fun, but easier than I expected -- it was still surgery, of course, but I have had other surgeries with more pain.Being hypothyroid was miserable but I knew it was temporary. You can mark the days off on your calendar: a prisoner of your thyroid. You may be able to get thyrogen injections if you have no metastasis, and that will prevent the symptoms of being without thyroid hormones. I did okay on the low iodine diet. I like to cook so I made soups and other things in advance, and I make bread all the time anyway(commercial bread is off limits). I had physical therapy for a couple of months and that made a big difference. It reduced pain and increased my range of motion.
There is lots of good information at www.thyca.org -- including a free low iodine cookbook.
I had 154 mCi of radioactive iodine; a pretty good wallop. The dose would have been smaller if my disease were not so advanced. I am stage 4a. Cancers are staged by the TNM system: tumor [size], [lymph] nodes, and metastasis. Thyroid cancer also uses age. The prognosis is better for people younger than 45, and I am 58. Nevertheless, my doctors are optimistic.
Hang in there and post again. Papillary thyroid cancer is the most common of the four types.

priyagopi · February 2010

leahs25 said:
PO thyroid Cancer
I had my thyroid removed almost two years ago, and had I131 radio active Iodine 6 weeks later. The surgery, like any surgery was painful and I was in bed a week or so, after this is where the removal of your thyroid started to be noticed. I was tired after being out of the house after an hour to two, needed alot of sleep, and had a small apitite. But I started on a cynthetic thyroid right away which helped me, compared with m sister who did not start right away and it took her a lot longer to get her strenght back up.
The radiaition was much more of a shock to me, my dr said it would take a few days, but in reality if was weeks, being off the thyriod hormone and with the radiation, it was not fun. I was fortunate that i did not work during this time, and was able to stay home and rest, and rest and rest.
I would really like to talk with you throughout this process, this is my first time on this site, and i have been really wanting to connect with other people in my same boat, this was a really hard time for me, and i had no one to talk to, no one who could tell me what it was like, what to expext and what was coming next. please feel free to ask all the quesionts you want. I dont have all the answers, but i do have a lot more resources now then i did then, and they might help you feel more prepared

Out of Surgery and on LID
Thank you all for all the information, i had my surgery on Jan 27th and I am doing better now, I am going on LID this week and I am scheduled for RAI sometime in March. My doctor told me to continue the thyroid medicine as he is going to give me Thyrogen shot....does anyone had this shot is it ok to to continue the medicine before the RAI??. Does thyrogen shot have any side effects?. My main worry is the LID, i am really confused as to what to eat and what not? I am an vegetarian, so really running out of options and also little nervous abt my body scan.

Anyway thanks a lot guys, this site is really useful and I am getting lot of information.

IowaBo · February 2010

priyagopi said:
Out of Surgery and on LID
Thank you all for all the information, i had my surgery on Jan 27th and I am doing better now, I am going on LID this week and I am scheduled for RAI sometime in March. My doctor told me to continue the thyroid medicine as he is going to give me Thyrogen shot....does anyone had this shot is it ok to to continue the medicine before the RAI??. Does thyrogen shot have any side effects?. My main worry is the LID, i am really confused as to what to eat and what not? I am an vegetarian, so really running out of options and also little nervous abt my body scan.

Anyway thanks a lot guys, this site is really useful and I am getting lot of information.

I am in isolation now. I
I am in isolation now. I took the Tyrogen shots on Monday and Tuesday and the Radioactive Iodine on Wednesday. My doctor is having me continue with my Synthroid throughout the whole process. I didn't have any side effects with the shots, except a little soreness. The radiation made my jaws very sore and a little nauseated. I also Itch alot, but showers help. Lemon candy helped the jaw pain. I also have a Zinc taste in my mouth that comes and goes.

priyagopi · February 2010

IowaBo said:
I am in isolation now. I
I am in isolation now. I took the Tyrogen shots on Monday and Tuesday and the Radioactive Iodine on Wednesday. My doctor is having me continue with my Synthroid throughout the whole process. I didn't have any side effects with the shots, except a little soreness. The radiation made my jaws very sore and a little nauseated. I also Itch alot, but showers help. Lemon candy helped the jaw pain. I also have a Zinc taste in my mouth that comes and goes.

Thanks for the info. Did you
Thanks for the info. Did you had pasta when you were on LID? what brand?

IowaBo · February 2010

priyagopi said:
Thanks for the info. Did you
Thanks for the info. Did you had pasta when you were on LID? what brand?

I found an organic pasta
I found an organic pasta called "Clearly Organic" made by Best Choice that didn't have anything added. No salt or soy. I found it at my local grocer. You just have to read the ingredients of everything. I found a pasta sauce called "Enrico's with no salt added at a health food store.

priyagopi · February 2010

IowaBo said:
I found an organic pasta
I found an organic pasta called "Clearly Organic" made by Best Choice that didn't have anything added. No salt or soy. I found it at my local grocer. You just have to read the ingredients of everything. I found a pasta sauce called "Enrico's with no salt added at a health food store.

Thanks, i will go buy one,
Thanks, i will go buy one, do you know is it ok to have 100% whole wheat flour and white rice during our LID

Thanks

IowaBo · February 2010

priyagopi said:
Thanks, i will go buy one,
Thanks, i will go buy one, do you know is it ok to have 100% whole wheat flour and white rice during our LID

Thanks

Only Basmati Rice. Wheat is
Only Basmati Rice. Wheat is a grain so 4 servings a day are allowed. There is a website you can go to (Thyca.org) that has a good free recipe book that you can print and a lot of other good information about thyroid cancer.

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