Post RAI treatment and neck swelling/ post thyroidectomy and neck dissection

[hypowife]

Hello,
My husband has had a thyroidectomy and neck dissection as he was diagnosed with papillary thyroid carcinoma.  As part of his treatment, he recieved 75 millicuries of 131.  His neck is very swollen , now two days after his dose.  Is this a normal side effect of radioactive iodine treatment?  He is fairly young,35 years old and was staged at a one.
Is a dose of 75 millicuries a fairly normal dose when one had lymph node involvement as well?
Thank you in advance!

[Sue23]

I had a TT in May and now preparing for the RAI scan, which I will have on Sept. 6th.  The doctors kept me only on cytomel after the surgery so that I would only have to be off of the meds for 2 weeks before the scan (cytomel leaves the system in 2 weeks normally).  I'm on day 4 without the cytomel and so far, so good. The surgery went well. A small cancerous nodule (less than 1 cm) along with 6 of my lymph glands was removed.

According to pathology report all the cancer was in the nodule, which was stage 1.  The radiologist said that depending on whether any thyroid tissue was left behind, I may or may not need the RAI treatment and if I do it will be a small dosage.

The worst things I experienced after the surgery was a sore throat for a week and swelling about the scar which made swallowing difficult. I was able to work from home the week after the surgery, although I still felt too weak to drive until the 2 weeks after the surgery.  Everyone is differnt but for the most part I was suprised about the ease of this surgery. 3 months after the surgery the swelling has finally gone done significantly and I find the swallowing difficulty to be almost all gone.

I'm very nervous about the RAI scan and possible treatment but when I think about other cancer patients who have to go through chemo and radiation, I consider myself lucky.

Best of luck to all.

[rakuXpressions]

Hi there,
My e-mails to you on regular e-mail are being bounced back by a spam filter as "undeliverable". Wanted to let you know somehow.....please advise! Am trying to stay in touch!
Lynne

[charley1986]

Hey, thanks for your input.   I am trying to learn all that I can b/c I am a firm believer that you must be very proactive in your health care.  I, like you, learn also so that I will be able to have a conversation with the doctor.  Knowledge is power, right?
I am doing pretty good at keeping a positive attitude and I have alot of people praying for me, so I konw that this will all be okay.  I know that it is going to take time to get situated on meds afterwards, but the thoought that I MIGHT ACTUALLY FEEL GOOD AGAIN, make me giddy!
Thanks again!

[bizwiz12751]

Hi there, it's not the worst thing in the world. But I must agree with hypowife, get as much information as you can. There's no better feeling (especially in this situation) than going for a doctor's visit and be able to speak with the doctor in a common language. Sometimes I would even chuckle when the doctor would tell me something and the steps were exactly what I expected to hear. It takes the surprise out of it, and personally in this situation a surprise is the last thing you need. My first surgery was in January (a lobectomy) and my second surgery was in February (total thyroidectomy). Each time I was home in less than 24 hours, make sure you drink lots of water. It took 8 weeks for me to become hypothyroid enough to go for the I131. Word to the wise with I131, make sure you drink lots of water there also you'll get out much quicker. The 8 weeks were hell (my family can attest to that)! The total body scan is a breeze but the medication adjustment has been quite a task. I have to tell you........the whole ordeal as a whole was probably one of the worst experiences in the world, but when you consider how it's been progressing for the better each time, it's not so bad. Keep up your spirits, that's very important and good luck.

[bizwiz12751]

Hi there, I know what your husband is going through since I had the total thyroidectomy in February. You should give your hubby some lemon candy. It will allow the throat to salivate a lot and it takes away from the swelling. Hang in there, it will go away soon. By the way, 75 is an average since my dosage was 125. Good luck.............it does get better.

[charley1986]

Hey, thanks so much for all your information.  I guess just the "c" words makes you a little nervous!  I will most definatly go to the group site.  I want to learn all that I can.
Thanks again!

[hypowife]

Thanks for the reply!  today the swelling has subsided a bit and finally tomorrow he gets to start his Cytomel and Synthroid...Hallellujah.

[hypowife]

Charley,
here is a link to the thyca support group...
http://health.groups.yahoo.com/group/Thyca/
There is a lot to learn and they are a great bunch to help lead you thru the steps of treatment!
Good luck with the surgeon, make sure he does many many of these a year, you want someone with alot of experience so you don't have damage to your vocal cord nerves and to make sure they get as much out as is possible!

And in prep for your RAI treatment, you will want to learn how to follow a proper LID diet, which the thyca group has great info for that as well,,,,our drs. were a bit on the lax side so I was so happy to be able to get more info.

Best wishes, and when you join the support group, Say Hi to me so I know you found it !
best

[hypowife]

Hey Charley,
the surgery was the easiest part so far, can you believe that?  he was back to work 5 days after his surgery, and he came home after one night in the hospital with two drains in his neck.  The worst part of this whole thing, well other than the word cancer, was going off of the thyroid medications.  Some people go hypothyroid with not much problem, and some get very very tired and irratable, cranky dont think straight.  his neck was pretty swollen right after his surgery, and it went down, but he had the radioactive iodine thursday and his neck is super swollen right now and he is still hypo. He gets to take his meds tomorrow, so hopefully he will improve in health and spirit soon.Good luck, and try going to the thyca support groups onYahoo, you will really learn a whole lot!  Good luck

[charley1986]

Hey,
I was just diagnosed yesterday with papillary cancer as well.  Not real sure what questions I want to ask you....could you just give me a quick synopsis on how everything went and how the surgery was, etc.  I am very anxious about the surgery - meeting with surgeon on August 16.  Anything you can share with me would be very much appreciated.  I wish your husband well.
Thanks in advance,
Charley

[Mark Lupo, M.D.]

75 is an average dose -- range is 30-150 typically with most studies giving around 100mCi.

Post-treatment swelling is not uncommon and usually subsides within 7-14 days.  He should be due for the post-Rx whole body scan soon and when he discusses this with the doc -- ask about the swelling.