Thyroid Cancer Support Group

HI,I'm very sorry to hear about your cancer. I also have many other health issues. Radioiodine Treatment ~ well this is what it was like for me and may not be for you!First they come in and tell ya what they are going to do.(you have drink this,but it's not as bad as I thought.)They have the room with plastic over everything phone , etc... The day u drink it will be ok. Next day for me I had trouble with my saliva glands (bring lemon heads to hospital) they help.I also was nauseated on and off , food tasted funny for a couple of months.For me I think the worst part was no one could come close to you so no hugs,even when I came home everyone had to stay at least arm length away. I had to use plastic food items so they would be trash right after use.My husband couldn't sleep in same bed for I think about week. What ever you take into the hospital room has to stay,so don't take anything you want to keep. Don't believe those who tell you your urine will glow, it doesn't.lol. I know when I had mine I was sooooo scared.I had no idea about the things I've told you, so I hope it helps ya some. You'll be fine not to bad,so please don't be scared. GOOD LUCK AND PLEASE LET ME KNOW HOW YOUR DOING.
RED :+)

Thank you for taking the time to write to me. I haven't talk to anyone going through this so your words really helps. I had so many surgeries during the past four years, this has not hit me quite yet. Although the surgery is over, I don't know if I can deal with this. I had another surgery (unrelated) shortly after this one. In fact, it was only 10 days ago. I'm now healing from this one. I have been healing for about a month. I would like to keep talking to you. Thanks.

Hey nothingleft,
I am getting ready for rai on may 22. I had the radiation safety officer call me last week with these guidelines.
Separate room for 3 nights
wash sheets daily alone apart from other wash.
wash dishes separately with water running not stopped up drain apart from others.
do not use plastic utensils because when you throw them out you have just contaminated the whole trash receptacle.
body fluids are how the radiation leaves you.
mainly urine and mostly during the first 3 days.
if you have 2 bathrooms have one just for your use.
flush 2 times after use.
wash your towel and clothes separately.
if you blow your nose flush tissue down toilet.
stay away from pregnant women, small kids, elderly.
staying in a motel puts other people at risk. the motel housekeepers may be pregnant and they handle sheets when you leave. Hope this gives you more answers. Be careful to get facts not opinion, this is really important. We also have to protect the environment not just other people! Yvette

I'm having my RAI on the 22nd. I'm really not happy with the support I'm getting from the hospital. They never called me directly to let me ask question. I get my information in bit and piece. Thanks to you, I got some very useful advice. I keep calling the hospital and I got nothing. I feel so frustrated. I get better response from my dentist. I just can't handle the waiting. I can deal with surgeries, but this is very different. I'm asking for the doctor to keep me in the hospital so that I don't expose my family. We live in a very small apt. I will take your advice against the hotel. I hope I will get some help.

In the hotel, I was planning on using old sheets and clothes. I was planning on cleaning everything as I would at home. I can control things in one room. At home it's too small to do this.

Maybe I need to find a better hospital.

Hi, I had my RAI 3 years ago, but I can pass along what I remember. In my case, they gave me a pill to take, not a liquid. I distinctly remember the worst part being the "iodine-free diet" for two weeks prior. I never knew how many of the foods I love have iodine in them, like milk! No milk for 2 weeks? Agh! I think I lived on water and matzo crackers...but if you go to www.thyca.org, they have a bunch of recipes for just this situation. Anyway, it didn't really hit me until the technician bringing me the pill came in my room in a hazmat suit! Following him (Her?), was the guy with the Geiger counter, to make sure the pill had worked. It was like something out of a Sci-Fi movie. Every knob in the room was covered with a rubber glove, and the floor was covered in paper. My meals were left right outside the door, and I had to give the nurses time to back away before I opened it. All talking was done via intercom. Nobody came in my room once the dude with the Geiger counter left, until the next day, when it was deemed "safe" enough to open the door. I echo what Red said - bring sour candy to suck on. The iodine treatment will damage your salivary glands if they are not constantly working during treatment. Your taste buds will be damaged for a month or two; there's not much you can do about that, other than wait for your sense of taste to come back. You won't glow, contrary to popular opinion. My coworkers got great delight out of telling me they'd watch the sky light up over the hospital and know I was getting treated! I was also told that anything I brought would have to be left at the hospital because of contamination, but I was allowed to bring everything home with me. The Geiger counter tech came in the 2nd day and checked it all for me, and said it was safe to leave. My doctor's concern was for anyone I came in contact with over the next day or so - including my pets - because the radiation could damage the thyroid of anyone who got too close, if they still had theirs. I stayed in one room for the day after I came home, and then everything was fine. Drink lots of water to help flush the iodine out of your system quicker. Through the whole ordeal, all I had to tell myself was "It beats chemo!".... Good luck; I'm sure you'll be fine!

How true you are about the iodine diet. Everything seems to have some iodine. I'm having the Thyrogen next week and I just started the low iodine diet. It is really harder than I first thought. Thank you for the information. I just found out about the cancer just a short while ago and the hardest part is not knowing what is happening. I had little opportunities to talk to my doctors, so I'm left in the dark about treatment. Please continue to write. It really helps.

One thing to keep in mind is the regulations for RAI is different by state. That's why some people mention staying in the hospital and others don't. I live in MA, which doesn't require that you stay in the hospital. Besides some very mild nausea, I didn't have any side effects from the treatment. In my case it was just a pill I swallowed (some hospitals use a liquid). My husband drove me home after, I sat in the backseat. The nuclear medicine doctor said I could be in the same house as my family but to keep about 3 feet away. Since we had a 3 month old baby at the time, we didn't take the risk and my husband and baby stayed at his mother's house for a few days. I know it's easier said than done, but I'd try not to worry too much about this treatment. It's really not that bad at all, just strange to think that you're radioactive.

I had Thyroid Cancer 10 years ago where they removed my entire thyroid. They sent me to Phoenix and put me in the basement of the hospital. The walls were thick concrete and lead. I had to pass through two sets of sliding doors. Everything inside was coated with thick plastic. I was there 10 minutes when a nurse wearing thick heavy gloves and a heavy apron pushed this cart into my room. On the cart was a small iron box. She opened it and said "TAKE IT" pointing at a white horse pill inside the box. I said where is my gown, my gloves? She said "take it." And I did. I had to stay isolated for three days. My food, doctor visits were connected by the twin sets of double doors. I told my brother to look north and that glow would be me. I was hypo so I felt weak and tired but no really side affects from the radiation. God bless. Hang in there.

I finally had my Thyrogen this week and the tracer dose a day later. The body scan was good news and that the cancer didn't show up anywhere. However, I did have lots of activity around the area where the thyroid was removed. I was told this is fairly normal and that I will go through the normal treatment to get rid of the remaining tissue that maybe normal tissue or cancer. I can only hope that the remaining treatment goes smoothly. Thank you to everyone for writing to me. You experiences has helped. I wish the best for all of you as you fight this cancer.