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What Can I expect with Radioactive Iodine Treatment? Actual procedure & Recovery

daisyduke
Posts: 1
Joined: Jan 2012

I recently had a total thyroidectomy and got the news that it was cancer. My doctor told me that I should consider the Radioactive Iodine Treatment. I sad yes, I would like to be aggressive in the treatment.

Then he gave me the good news that I need to go to the hospital for the treatment. I could barely handle staying the 1 night in the hospital after surgery. I was literally dressed and ready to go within an hour after surgery and had to sit around for 19 more hours just waiting to get out of there. I did not need any pain meds and did fine with recovery.

So, Can anyone tell me what the treatment was like, is it an all day thing? Are there several tests? He told me it was a drink, but I am wondering if I have to stay there all day? Are you actually admitted to the hospital? Do you get to keep your clothes on, or do you have to wear the hospital gown? Do you have an IV? Is it a general room with others getting treatment, or are you actually in a hospital bed and in a patient room?

I was told I would take thyrogen. Is that a shot they give you the day of the treatment or does the treatment involve several trips to the hospital? He told me it was stage 1 and the lymph node they took was clear, but I had cancer in both sides of the thyroid. FYI my biopsy was negative and I had to be aggressive for my endroconoligist to refer me to a surgeon. So if anyone is reading this trying to decide on surgery or not, for me I was worried about the complications and once I met with the surgeon he was confident that a total thyroidectomy was a good plan, but it was up to me. My mass was 4.5*3.5 on the right side and 1.5*2 on the left side. I only noticed the right side and had pain in the right side.

I understand that you need to stay away from people the first 2-5 days and my plan was to rent a hotel room near the hospital and stay there, since I do not live alone and have pets. I thought I would be able to drive, but mostly planned on hanging out and watching movies for a few days. Is that realistic given the way you feel after treatment? I specifically asked if I would get sick and my doctor said no you should be fine, but I notice some people comment on how weak they are.

I am eager to hear from anyone that has had this treatment. I don’t know if age makes a big difference in recovery but I am 33.

Stacie3071's picture
Stacie3071
Posts: 23
Joined: Sep 2011

I had my RAI Dec 2011. And all I had to do was go to the hospital take a pill.. then go home. I was isolated from my family I could not spend more than 45 minutes at a time in the same room with them and I was as far away as I could be when I was with them. And you need to eat from throw away plates and plastic forks and such.. makes it alot easier.. As far as pets. I hate to say this... but... your pets are not going to live long enough to feel the effects of the RAI unless you have a bird that might live 50 years or so.

I was slightly nauseaus after my RAi but it passed once I was able to eat something.
Good luck with your procedure.. you will do fine.. Keep in touch!!

Stacie

myangelone
Posts: 2
Joined: Mar 2012

I am going to have the thyrogen shots followed by the RAI treatment next week. I am a little scared. I hate having nausea and being by myself during that time. can any one tell me what exactly happens and what you feel like after. I have read up on it till I am blue in the face, but it is more comforting to hear it from someone that has gone through with it.
Thank You

Rita12345
Posts: 5
Joined: Dec 2011

I’m new to thyroid cancer myself but from what I’ve read, I really think how you feel after depends on the dose you receive. I just had 170.8 mCi of RAI on 2/27/12 and I didn’t feel very well the next morning. My stomach was upset, my jaw was sore and swollen (salivary glands below the jaw?). Thankfully, before I went in, I read on the message boards that I should gently run my thumbs along the jaw line… no one at the hospital told me that! Not one person. But because I did the swelling went down and it felt much better.

I experienced some nausea… just enough to be uncomfortable and make me not want to eat! I did take an anti nausea medicine that made me drowsy. I’m not sure it was really necessary but it did make my time in the hospital go by quicker as I slept off and on all day. I do have a family history of acid reflux (along with esophageal cancer and Barrett’s Esophagus). I’m not sure if the nausea was actually acid reflux, because I’ve been experiencing a lot of heartburn/acid reflux since receiving the RAI. I’ll have to wait and see if it is a permanent thing or hopefully just temporary.

I also immediately had this awful taste in my mouth… which I still have. I’m hopeful that it will go away soon.

Honestly, the RAI treatment wasn’t that bad even though I had what is considered a high dose and I didn’t feel that great the next day. I mean it wasn’t a pleasant experience and I don’t want to do it again any time soon… but I’ve felt worse when I’ve been sick with “just a virus.”

myangelone
Posts: 2
Joined: Mar 2012

Hi..I am going to have my rai treatment next week. I am having the two thyrogen shots first..i opted to go this route. I hate feeling nausea..can you tell me truthfully how well you did after taking that pill. i am afraid to be alone if i am not feeling so well.
Thanks.

millbraegirl
Posts: 9
Joined: Jun 2012

your comments are very encouraging for me as I am getting ready for this. can you talk to me via phone also? if so write me at millbraegirl@yahoo.com

Angie_E
Posts: 1
Joined: Feb 2012

My RAI was a little more difficult for me. Because of the dosage I had to be completely closed off for 72 hours. I was fortune to have a friend with a Mother-in-law suite that let me stay with her. I have a seven year old and could not be near him for 7 days. I slept for most of the first three days. The first 12 to 15 hours were fine, I guess the medicine had not gotten into my system yet, but after that...I felt horrible. I swelled like a bullfrog and my throat was so sore I could hardly swallow. I also had a horrendous headache. Advil worked wonders.
Make sure that you have a lot of sour, hard candy...it really helps. I slept with one in my mouth so I could suck on it when I woke for short periods. After the first three days, I began to feel better, weak, but not sick in anyway.
I did not get my appetite back for several days and could not taste anything for several weeks. That was the strangest part...not being able to taste things.
I am quite a bit older than you...I am 50. That may make a difference in your recovery as well. Good luck!!! You will do fine and the outcome of being cancer free is worth the trouble.

-Angie

CherylMike
Posts: 118
Joined: Oct 2009

Hi Daisyduke - I am 51 years old and had a TT and my RAI a little over one year ago. I did go to the hospital radiation department to have my treatment. I was ushered into a room with a chair and the doctor came in, explained the treatment (also spelled out on a couple of handouts), gave me my pill (103 RAD) and left the room. I had to stay in the chair (no hospital gown or IV) for one hour then I could go home. I would not go to a hotel as you will expose people working there to the radiation. I have 2 children at home (15 and 25) and dogs (one is a puppy). I was told to not have contact with anyone for 3 days (including the dog). The puppy I was to stay away from for 1 week as well as young children and pregnant women. After the 3 days I could have limited contact for a week. I made up my meals ahead of time as I needed to stay on the LID during the three day period. My daughter would set the food outside my door and I would get it after she left. I used disposable plates and silverware. I was told to flush the toilet 3 times after use, rinse the shower and to wash all clothing, bedding etc. that I used during this period separate from the rest of the household laundry. I also used disposable gloves when handling the phone, TV remote etc. Make sure you drink plenty of water (to help flush the radiation) and suck on sour candies or lemons - as much as you are able (this flushes the salivary glands so they will not be damaged). I had no pain or headaches etc after the treatment. I did experience nausea but took medicine for it and then was fine (the doctor had prescribed it ahead of time). I would call your doctor with your questions. I know from reading this board that peoples' experiences vary. Good luck with your treatment. I just kept thinking - "radiation, do your thing and kill that cancer!"

teamwink
Posts: 97
Joined: May 2011

Hi there!
As you are planning to do, I had planned to go to a hotel at the advice of my doc. I found that this is HIGHLY INADVISABLE, as you could potentially be exposing others who do not know of your exposure to RAI. Nuclear medicine in my area told me absolutely not to go to a hotel. I was isolated in a room at home, and thoroughly cleaned everything. Like you, I have kids and pets, and I was told to stay away from them totally for a week, then I could be around them for brief spurts - they could be on my lap for no more than 10 minutes and no snuggling with them until I was rechecked a bit afterward.

I felt completely normal after the RAI dose - a bit of a tin taste in my mouth, but otherwise I took the opportunity to watch lots of TV for a week. Your doc may recommend that you remain on the LID during part of treatment - this varies a lot from doc to doc. They will probably tell you to drink lots of water and to flush twice after you go to the restroom.

Hope this helps!

millbraegirl
Posts: 9
Joined: Jun 2012

after you were treated and you stayed away fro a week from people how long did you stay away after that? off and on how long?

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Hi,

The precautions that you are given when you take RAI aren't totally driven by medical necessity. Most states have laws which may dictate what sort of precautions your doctors well tell you to do. When I quizzed my endocrinologist who speciallises in thyroid cancer, he told me that 99% of the dose you take will be expelled from your body in your urine within 24 hours, this is why they tell men to urinate sitting on the toilet instead of standing up. Depending where you are, you may be required to stay in isolation in a hospital for three days post-RAI. A friend of mine who did this 15 years ago did have to stay in isolation in a hospital for three days but the law had changed by the time I did the same thing two years ago.

I tried to stay away from people as much as possible for a week and then limited contact for another. This was surely overkill, but I felt better taking the precautions and since I'm retired, it wasn't a problem. If you don't already, you'll probably want to do your own laundry and wash your own dishes, I don't think you need to worry about disposable plates and utensils, I didn't, but if you feel better doing that, than do so. For the most part, I followed the instructions I was given from the nuclear medicine people who gave me the RAI dose. I didn't have any small children around or I would probably have gone to greater extremes.

Alan

Oritxu
Posts: 1
Joined: Feb 2012

Hi there,
I had my thyroid removed in Sept 2011 and went through radiation at the end of October 2011. (late stage 2 to early stage 3 carcinoma with lymph nodes involved and removed as well) I was told by my family Doc, my Endocrinologist as well as the radiation Doc that people have a wide range of experiences during radiation however each of them spent a lot of time downplaying any of the more serious side effect and even went so far as to say most people don't feel bad at all. I only mention this because I was one of the small percentage of people who reacted badly during the process and was really not mentally prepared.

Going hypothyroid was miserable, I was as sick as I have ever been. I don't want to scare anyone as most people don't react as I did, however we are adults and I know I would rather have been given the best information up front to deal with it and understand it. I was not able to go to work after about the 3rd day off Cytamil and all of the symptoms you can read about hit me hard. Just be prepared in case you feel equally as bad. Between the Hypothyroid/diet stage and then radiation I was out of work about 3 weeks.

They also portrayed the radiation treatment as being very easy and casual. they even told me that many people continue normal activities like exercise etc during their isolation period. I pray and hope that everyone has that experience! However some people don't. During isolation I was very sick, hindsight talking to the Doc I should have been in the hospital. I swelled up like the Michelin Man, I had the worst headache pain I have ever had that nothing worked on, not even my migraine Imitrex. I lost all sense of taste, my vision started to develop a sort of blueish tinted haze...sort of like looking through smoke at a campfire. I was nauseous and could not eat or keep anything down. Being Hypothyroid and then this on top was pretty bad. It took several weeks for me to notice that the vision change was gone and my sense of taste started to come back. I'm all better now.

I'm a active athletic guy and always try to not complain and tough things out. So at I did not bother my Dr. over the weekend (I set up radiation with weekend time to try to get back to work quickly) When I did call they told me I needed to be admitted to the hospital and should have called sooner. Please let your Dr. know if you think you are getting sicker than you thought like I did.

Like I said most people don't react like I did, however just be aware that some do and to call your Dr. when in doubt.

(I was also told initially that there is a 2nd small dose of radiation and scan that is no big deal and I would not need to be isolated or have any side effects. My Doc told me last week that is not the case, it will be 2 weeks off meds to go hypothyroid again before I take the second smaller dose. We are trying to get the new shot to prevent that because I got so sick but it is in short supply and they cant always get it.)

Tips that worked for me:
* I stayed home..you don't want to be in a hotel for numerous reason, getting very sick is one of them. You want human contact (verbal, not physical) during the treatment and can feel all alone.

* Using my iPad and face time with my wife and kids was awesome and the kids loved it.

* Use paper plates and plastic disposable cups etc and use a large lawn trash bag and just throw it away.

* Plan your clothing and bedding so that you wear old stuff you don't care about and wear it as long as you can so you can throw it in a large lawn trash bag and let it sit for a week or so after you are done. Then it is safe for everyone to handle and wash.

* I sucked and chewed all sorts of sour candy as directed to clear salivary glands but they still swelled up and ached but still tasted good =) Drink tons of water!

Here it is Feb 2012 and I feel 90% back to normal. I have started to lose the 20 lbs I put on, am back to working out and feel good. I still have the vague hard to pinpoint or describe symptoms that many talk about once on meds. Fatigue, not remembering things..just a general "not right type" of feeling. My last blood test I was a little low on levels and they bumped my dose up and it seems to be making a difference!

I wish you all the best!

Todd

sunnyaz
Posts: 582
Joined: Oct 2010

I had two doses of RAI. Both with thyrogen injections. They are given in the glute muscle two days and one day before your treatment (two doses). Third day is the treatment.

I went to Nuclear Medicine, took the pills and was told to go directly home after they measured my emitting radiation, about twenty minutes after taking the dose. I was at the hospital a total of one and a half hours including check in and waiting time, they didn't get me in at my scheduled time. No needles, no gowns and no IV's. It's more like a doctor visit. You may not stop to use a restroom or eat on the way home, so go pee right before you take the dose and have a drink ready and waiting in your car. I was on the LID for three days into my treatment for maximum uptake of the RAI. You will need to fast for a few hours before taking the dose and then you can drink whatever you want and eat about and hour and a half later.

As in one of the posts, use disposable plates, forks, spoons etc. Use gloves when handling anything that someone in your house will touch. I.e. going to the refrigerator for food and drinks. I had a trash bag in my isolation room that I put everything in until after my isolation was complete. Then I tied it up and threw it away. I washed all of my isolation clothes in the washer and ran an empty load with soap and bleach afterward to wash out the barrel. I also used a ziplock bag to put my TV remote control in for protection. I just threw it in the trash bag with all of my other exposed trash after isolation and I cleaned everything in the room and bathroom before my husband was allowed back in. Lysol wipes worked great for this because I could throw them in my isolation trash as well.

Limit time with other people to 30-45 minutes and keep about a ten foot radius for the first three days. After seven days you are mostly free of radiation. I stayed away from my daughter for a full three days and then limited my time for the next four days.

I didn't have sickness from either of my doses. Most people don't, in fact it's really rare. Some drink too much water and make themselves sick from that. I used Jolly Ranchers and Life Savers to keep my salivary glands working. I didn't have swelling or pain in the salivary glands except for only slightly one day and it went away after a short while with drink and sucking on candies.

Hotels are not a good idea. You expose the public to radiation. It is best to go home and stay there. I went for short walks around my neighborhood but stayed clear of other people. I exercised in my isolation room and took baths, watched TV, posted on this site and kept up with my friends on Facebook. I even watched movies with my husband and daughter with my chair about twelve feet away from them and a blanket over my favorite rocking chair. I washed the blanket with my clothes afterward. I didn't wear gloves because your hands sweat in them for long periods of time and this is more risky if the sweat should drip out of the gloves and land on something they will touch. I use gloves only to touch "community property." I washed my hands after taking my gloves off to wash off any radiation that might have accumulated from sweat.

I was 42 and 43 when I did RAI. I was a fairly active and healthy person before my diagnosis in 2009. I started to go down hill about ten months prior and gained some weight. Last year I lost 30 of the 60 or so pounds that I gained. This year I plan to loose the rest. I have been cancer free for one year. My last RAI was February of 2011. In fact I was in isolation for my second round of RAI this time last year. I can honestly say that the unknown of it in the beginning was the worst part. The actual treatment and isolation wasn't bad for me at all. I rather enjoyed the time off and alone as a nice change of pace for me.

Go to the thyca website (Thyroid Cancer Survivors) for the LID cookbook. You will find some great recipes. Pre-make all of your food to take the guess work out of meal time. I made large batches of soups, spaghetti etc. and froze them for easy access when I was in isolation. Beware however, the cookbook includes some recipes with cranberries and strawberries, I believe. They are loaded with natural iodine. You can get non-iodized salt in the grocery store next to the regular salt. Use it for cooking and follow some of the basic recipes with your own twist to make it yours and you will get through the diet just fine. I wish you the best of luck. We are here if you need any help or other advise.

Blessings,
Julie-SunnyAZ

FLT292
Posts: 2
Joined: Feb 2012

I had a rough time mentally with my RAI treatment. The hospital staff could not have cared less, they were very short and rude to the point that I told them that if they did not improve, I was going to get dressed and walk out. I finally had the Head Nurse of the entire hospital come talk to me and was still not very helpful. Don't ever feel like you are bothering people. Nobody is going to look out for your best interest better than you. My point is, that the people that are treating you and the environment in which you are being treated has alot to do with how you menatlly and physically respond to the treatment. I wish you well and hope your family is there for you, In my opinion my wife could not have cared less about my treatment and it was a very rough time for me. I felt abandoned and that I was on my own,and still feel that way. God Bless

Rita12345
Posts: 5
Joined: Dec 2011

I too am doing RAI treatment soon (end of the month). I’ve already called the hospital twice with questions and they are very helpful. I will probably call them again with my newest questions, but thought I’d ask her first. Did anyone bring their own drinks and snacks to the hospital? It sounds like nurses are going to want to limit their exposure to me, which I can understand, but I think that means I will be drinking water straight from the bathroom sink, and that just doesn’t sound very appealing… especially since I will have to be drinking a lot of it! I also don’t really know how hungry I’ll be, but hospital food isn’t the greatest and again with limiting exposure, I was just thinking it might be nice to have something on hand. Honestly, my biggest concern is whether or not there will be coffee during my stay. I think I’ll try and wean myself off of coffee over the next two weeks because I just don’t see me getting 3 cups worth while I’m there. I know this is a little silly… but I’d rather be prepared.

bituin's picture
bituin
Posts: 10
Joined: Feb 2012

hi daisyduke,

i've done my RAI 2 years ago.I've isolated in a room for 2 days after that i don't able to touch my 2 year old baby and get away from her for two weeks.it is an easy procedure but the isolation thing is not easy and boring.

bituin

millbraegirl
Posts: 9
Joined: Jun 2012

how long exactly is the isolation time for?

Hannah1
Posts: 61
Joined: Jun 2012

Hi Daisy, I just finished my 2nd dose of RAI last 6/13/12. My Endo Dr took me off synthroid but replace
With cytomel 25mg twice a day for 2weeks then totally off for 2 more weeks then went to the dr. To take
The RAI. Went straight home and isolate for 2days. On the third day went back for the full body scan and
PET/CT scan. This is all done in the drs office. You have to be on low iodine diet 2weeks prior to RAI. You
Have to be still during the scan for at least one hr. Its not too bad. It's painless. The only side effect I encounter
Was dry mouth/tasteless so you need to hydrate and suck a hard candy to stimulate. Continue to isolate for
Another 3days. Lastly you will have another full body scan to check if the RAI is working. I hope this will help you

Hannah1

millbraegirl
Posts: 9
Joined: Jun 2012

can you give me quick list of stuff to get for my no iodine diet?

millbraegirl
Posts: 9
Joined: Jun 2012

can you give me quick list of stuff to get for my no iodine diet?

Hannah1
Posts: 61
Joined: Jun 2012

Hi Millbraegirl,

Check out www.thyca.org

lendance
Posts: 2
Joined: Jul 2012

Hi the RAI treatment only last couple minutes or hour depends on how they will approach a patients there.
I just got mine couple day ago. I am still in my isolation process so far didnt have any bad feelings or any headache etc.
I think because I got the very very small dose. My radiology doctor told me during the procedure that my endocrinologist wants me to take very little
dose based on my age 32 and weight I've lost to much weight.endo told me its not cancerous thank god
During my treatment there is a radiologist,nurse,safety officer,husband was there. I came there with questions too:)
I took a pill and lil bit water then after that I went home.isolate myself in the room.
They told me to stay and dont go nowhere atleast 72 hrs after that wash all linens double wash throw the garbage
put it on at least 4 bags.shower 4x everyday and limit what I touch.
I didnt get any IV or anything( I am outpatient )but i am allowed to take my propanol bec. my heart is out of contol 132
I didn't do. Anything extreme at all.my doctor told me
"it's all about common sense"just make it sure your aware with your time frame as soon your done with
your isolation especially
c. From kids and pregnant woman.

For me staying in the hotel will not an option specially you are in RAI
just to think that hotels are public places. people going in and out there.
Your house or if you insist you can be at the hospital too but for me they told me to go home!( I have a 4yr at home too)but they send me home SO FAR I DIDNT HURT NOBODY THANK GOD.
good luck hope you get better soon

framedame
Posts: 1
Joined: Mar 2013

thanks for any info. my 1 cm tumor indicated papillary cancer with a folicular variant, with borderline margins. my second surgery to remove the 2nd lobe was in december and after nearly 2 months of haggling with my insurance company over thyrogen injections, RAI is finally this week. my endo is giving me a dose of 30 mCi's. has anybody ever heard of an initial dose so small?? day 1 and 2, thyrogen; day 3 - RAI at the hospital and then i go right back home; days 4,5,6, - isolation; day 8 - full body scan. i've been on my restricted iodine diet. when will i be able to eat normally? and what should i expect with such a small dose? fyi, i'm a women in my 50's. thanks

 

gsj
Posts: 1
Joined: Apr 2013

I'm going thru a silmilar situation.. I had the first surgery with a 8 mm, and that surgeon didn't want to remove the other side, so I went to endo doctor and she suggested that I remove the other side, I had surgery Friday, and it doesn't look cancerous, but the surgeon suggested that I have RAI.  Why dd insurance give you such a hard time?
why did you get more information of why the doctor gave you a low dose?  Are did your full body scan turn out?  I'm also 51 years old?  Where you very sick?

 

Thanks

Jessica's Mom
Posts: 2
Joined: Apr 2013

http://www.thyroidcancercanada.org/userfiles/files/RAI_SalivaryGlands_Mandel.pdf

galinbakersfield
Posts: 23
Joined: Apr 2013

I had TT thyroid in 2008, my thyroglobulin levels had been going up and up, did ultra sound and full body scan both showed regrowth, possibly cancer. Did RAI on Thur, stayed in the hospital for 4 days (I have kid and a toddler at home) I did get sick to my stomach (still am a bit) had very very swollen salivary glands, they are now tender, and taste is nil. I have to drink drinks with flavor bc water tastes like metal. Other than that, just tired. Im sure that has a lot to do with the fact I've been off meds for 6 weeks too. Best of luck. 

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