total thyroidectomy and radiation iodine treatment

[mccool98]

Hello, I'm CJ
I just had a total thyroidectomy laast month and in a couple of weeks I'm having the radiation iodine treatment done..
Has any of you gone through this? I don't know what to expect and my endo is not much help...
Thank you

[Mandyj05]

I have to have RAI next week due to having a thyroid cancer and have my total thyroid removed. I know no one who has ever had this done and I was wondering if anyone has any tips or suggestions for me. I have to stay at a hotel for a week because we live in a small house and I have 5 kids. I don't understand why they can't just keep me in the hospital. A hotel is such a large expense for me, especially when I am on a low iodine diet and can't eat out or buy simple meals.

[MANmom]

Can you check into the BOQ or Enlisted Quarters, or have your family do that for a few days?  Can they go to a neighbors or family members for a few days?  That would be the best option, the radiation is the worst in the first 24 hours after dosing.  I have a neighbor who was a chemist and worked with RAI 131 for years, he explained that to me.  If you can limit the first two days to no contact, that is better than nothing.  I had my RAI done at Naval Hospital San Diego, they actually had quarters there that you could stay in for the first two days, I did not do that, my family actually went on vacation for a week while I radiated.  Does the base have a hotel facility?  Any cheap hotels close by?  If you explain your situation to the doctors, they may have some options for you.  No need to risk radiating your family.

[samd1]

last year i started treatment for hep c w/ interfuron and dr. caught
small lump on my thyroid last 10/09, found out it was hot, by dec.
12/09 thryroidectomy, rai treatment feb 9/10 body scan feb. 16/10,
which was clean but my taste buds took a crap. thats how i found this site. if i can answer any questions feel free to ask.  

[MamaSo]

Thank you so much for your information. I will be seeing my doctor this coming Friday so I will ask him if I'm going to receive the inodine in pill form or injection. I would truely prefer the pill because needles freak me out a little.

[Liz94]

I had RAI 2 years ago following a TT for cancer and it was in pill form. Basically about the size of an Advil Liquigel.  When I had mine I was taken into a room by the doctor. He told me exactly what was gonna happen before we did it and it was pretty uneventful. He was totally protected from the radiation, put the pills in a dixie cup with tongs, told me to dump them in my mouth without touching them and then drink the full glass of water he gave me. He left the room, I did what he said and then I exited out a back door to the parking lot in order to not "radiate" anyone in the waiting room.  My side effects were extreme nausea but I think it was because I was so hypo and off my medication and not so much the RAI.  Just make sure you suck on lots of sour candy for your salivary glands and drink more water than you can stand.

[MamaSo]

I will be given the Iodine Radiation in about 3 and 1/2 weeks. I was wondering on what part of the body do you receive the injection? Is it in the arm? I had a total thyroid removed because it contained 4 cm of cancer. The surgery went great which I just had 4 days ago. Luckly I haven't had any pain so no pain pills needed. I stayed in the hospital only over night. But yes, I am scared about the radiation.  I read up on all the do's and don't's and the after affects. I really scared myself months before my surgery of what could happen. Now I'm doing the same thing about the next step. Could anyone help out? Sure I'm not along and if you are reading this, you have gone through the same thing.

[Ancestrytreemom]

I have had three radiation treatments and two surgeries. The last surgery was on my birthday in January. They happen to find a few reminect of cancer left. I am 6 months past the last surgery. I am going today for my 6 mo check up. I have been living with this for 2 1/2 years. It took me until the last radiation to figure out all the numbers and test to understand where and what I am suppose to be after this was all done.

This is a process. You need to keep moving forward, because peace of mind and body is what is going to make you well.

I hope this helps,
Ancestrytreemom

[utahmomma]

Fears are normal and, unfortunately, it's pretty common for medical "professionals" not to address them.  That's why this forum is so great.

Seriously reconsider putting off the RAI.  You want to kick whatever you have as soon as possible.  Many here have stayed in hotels.  My sister had a tiny (about 600sq ft) home; a husband, two dogs, and three cats.  She stayed at a hotel for a week and took all of the precautions there.

Your health comes first.

[mccool98]

Thank you all so much ! Until I found this forum I tought I was going crazy with all of these crazy feeling and fears.
I have doctor appt tomorrow and I will ask about the thyrogen shot. I'm also thinking about postponing the RAI until we can find out if we are moving to a bigger house. That may be the best I can do to protect my family.
CJ

[utahmomma]

Everyone has given you some good information.

Here's a great site ThyCa.org that goes into more detail about the diet, the scan, and the precautions:

http://www.thyca.org/rai.htm

Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and probably '08

[blksapphire]

Hi,

The do's and don'ts of RAI treatment:  At least this is what I was told by my endo dr and the doctor who gave me the dose of treatment.

DO:  
1)  Since you only have one bathroom, purchase some plastic, cut it to size to put over the seat for each use and flush at least two times when finished.
2)  Drink lots of water: I purchased a case of single bottles.
3) do suck on sour candy
4)  if you must stay at home, isolate yourself in your room with everything you will need prior to taking the treatment, so that no one has to enter the room.  They can leave your food by the door.
5)  bur plastic cups, plates and utensils prior to treatment and keep a plastic trash bag in your room.   (if possible, double the plastic bag)
6) byuy some books that you don't mind tossing in the trash after this is over.
7)  do cover your cell phone and tv changer in plastic.
8)  do cover your mattress with a plastic cover.
9)  do wash your clothes seperate from others.
10)  do all your shopping and washing before the treatment so the family wil have their snacks and clean clothes.
11)  buy throw away gloves  to use since you only have the one bathroom.
12)  Most of all do all of this prior to the treatment.


DO NOT:

1)  do not sleep in the bed with anyone
2) stay away from small children, babies and pregnant women.
3) do not prepare any food.
4) stay away from your dogs and cats
5)  do not share any foods

I hope this helps.
Take care and keep us posted!
Terri

[KelDC]

There are many of us who have been where you are!  I had my RAI last month, and I am doing well now.  It does get better!  

Have you started the low -iodine diet yet? If your RAI is two weeks away, you should be on it.  Thyca.org's cookbook (free on their website!) has lots of good recipes in it - it helped me a great deal.  

I would speak to them again about hospitalization just to ease your mind. Be sure to mention your children and their ages, the one bathroom situation - and be assertive. This is your health and your family - they have tons of patients, know what I mean? If nothing comes of it, you'll know you tried. Do you have family nearby who could host you or your family while you complete treatment? Or close friends?

I'm sorry you have to go through all this without a supportive doctor. I'm glad you found this forum, though - it's full of nothing but support and knowledge, and I hope you find both here!  Best of luck!  

[dscoochie]

If you live in a small house with your children and one bathroom, they really should be keeping you in the hospital for RAI.  Or, is a hotel of some sort an option?  The injection that Trish is referring to is called Thyrogen.  Its a very expensive injection that avoids going off meds and going hypo for RAI.

You know about the Low Iodine Diet I presume, as  you should be on it already if your RAI is two weeks away.  Do you know what dose of RAI you will be given?  If its small (say under 50 millicuries) that might explain why you are going home immediately, but the one bathroom is a concern.

[mccool98]

Hi Trish, Yes I already had the sit down with the nurse, they said they won't be keeping me in the hospital, wich I wish they would because beeing isolated from my family won't be easy, we only have 1 bathroom and a small house ( we live in a military base).The bathroom thing really worries me, I don't want to take any chance in my boys getting exposed.
They didn't tell me anything about injections.
How do you feel now? Do things get better?
I'm taking 50mcg of cytomel now, and after RAI  I will be taking synthroid also...

[nissah46]

Will you be having an education session before RAI? I had to sit with a nurse and go through a booklet describing the Do's and Don'ts.  When I had it I had to go on a Low Iodine Diet and get Thyrogen injections, but I had it 5 months after my TT. You may be kept in the hospital for a couple of days depending on the dose that you receive.  You must be isolated at home from other family members especially children and pregnant women.  No sleeping in the same room with  anyone. Use separate bathroom. Flush twice. Separate laundry, dishes, and no preparing food for consumption by others.  Drink lots of water and suck on sour candy to keep saliva production increased.  
Trish