Feeling terrified about Radioactive iodine therapy

  • 11 replies
  • 27 subscribers
  • 2514 views

Hi guys, 

Thank you for taking the time to read this. 

Had my thyroid removed in November after a papillary cancer diagnosis. I have been waiting for a date for the radioactive iodine therapy but they have had a backlog. Suddenly got a call to start the low iodine diet that day as going in in 2 weeks time (this coming Tuesday). 
I am more nervous about this than the operation. I’m terrified of being stuck in that room and feeling claustrophobic and panicking and not being able to leave. 
Do you feel ill after taking the capsule? I know I’m going to have trouble swallowing it!
I also have a painful bladder condition & have been told that it can affect your bladder. So the thought of being in pain and have no help is adding to my anxiety. Did anyone have problems with their bladder?  

Any help or advice will be very much appreciated. Thank you so so much! 

  • Hi Blondie98, I'm afraid I can't offer any advice as I am behind you in the process. I also have papillary thyroid cancer and I'm currently waiting for my surgery on the 30th of this month. How did you get on with your surgery? Did you have the full thyroid and nodes removed? 

    I hope you get some support for your RAI treatment. 

  • Hi GavinT,

    I had a total thyroidectomy & the surgery went really well. I was nervous about coming round and how it would feel swallowing, talking etc. It was fine, I had a terrible headache but I do get bad headaches. My vocal chords were fine & I felt uncomfortable but that’s to be expected. My calcium levels were normal so to my surprise I went home the next day! It did feel quick but in these covid times was probably best. 
    They say you have to sleep upright to help with any swelling & I found one of those V pillows the most comfortable. Also vitamin E oil to reduce scarring. I will be honest and say I felt uncomfortable until the stitches were out I think it was 5 days after the op but all good then. 
    Wishing you well & a speedy recovery. 

  • That is really good news. I'm glad it all went well for you. That is a real good tip, thank you. A V pillow and Fit E oil is going on the shopping list. 

  • Hi.. So I just came home from having the RAI... I'm very tired and still a bit drained  I had 34 lymp nodes removed and total thyroid removed I can't go out yet as I'm still radioactive.. I've got some swelling and pain where the RAI treatment.. I'm told it's normal as the pill has worked and is still working killing off cancer cells  so I'm not to worry I've had my spect scan that was very tiring.. And I didn't like it at all laying there for over 1 hr my back and neck hurt very much as I couldn't move 

    So ill be honest and tell you it doesn't hurt the RAI treatment you feel nothing but tired and maybe bit low .. You need to pee lots to get the radiation out.the more you shower and empty your bowels and pee the quicker you'll get out of hospital.. . Its not lonely you'll have a TV.. And hopefully a window.. You'll have your phone they will cover it..you can take kindle or tablet.. You can read they will cover alk with like a celotape that really does work when I left they took reading with tape on it was so high then reading with tape off and nothing so it's works to cover objects 

    I had amazing rad man  I call him. Robert the rad man he gave me the pill and checked my radiation levels all the time. He was my only real contact and I trusted him totally to know what he was doing

    . You'll get food and lots of water to drink.. The nurses are great they know that they can not  come near you so they just leave your water on the table just behind the big led  screen that protects them from you.. Now the difficatl part... Its the moment you take  the pill you'll be told very carefully how to down it.. You must not keep it in your mouth.. Its very heavy so it goes down very easy... You will put a test tube into the dome where the pill is and you'll hold the test tube with the pill in it as you do this you'll have the rad person near you watching and guiding you... Its not difficult but its totally out of body experience as once you've done that.. You then lay on your bed under a sort of devise that's in the ceiling where your be checked on the amount you've got in your body.... When I laid on the bed and waited for 30 mins.. I THEN REALISED JUST WHAT REALLY HAPPENED IT FINALLY HIT HOME THAT I'D TAKEN SOMETHING SO DANGEROUS TO EVERYONE THAT THEY CAN'T TOUCH ME OR EVEN COME ONE MTR CLOSE THAT IF I GOT I'LL THERE AND THEN WHAT HAPPENS.... IT WAS THE MOMENT I REALISED.. PLEASE DEAR GOD I HOPE THEY'VE GOT IT RIGHT AND DONT KILL ME OFF.. it was all very silly of me as it all went very well and it was my silly brain just over doing all the things that had happened since I got thyroid cancer

    It was easy in the hospital.. I felt very sleepy and I don't want to go through it again but I feel almost happy that I got through it all.. Still indoors as I'm radiating still till 30th march.. Now I look back on it all and it's bad.. But it's do able and I feel so much stronger now that I've gone through it.... Please try not to worry everyone in the hospital is so well trained they are absolute hero's.. They make you feel safe.. But please have the thought that you will go through allot of thoughts... As your on your own totally in body.. But have support on your phone you'll need it

    Try not to worry.. Go through it and try to look at it like your going on a marathon.. Your preparing for the big run.. When your in it its hard.... But once you've got through it. You really will feel like you've achieved something so difficatl.. And you have... You came through  thyroid cancer...

    Take care if you need to talk I'm here.. 

    Regards Susan 

  • Hi . In all honesty for me the RAI was really straightforward.  I had no issues and would suggest neither will you. I had no issue swallowing as it was about the size of a paracetamol tablet. As long as you drink plenty of fluid ( not gin)!or other favourite tipple, I really think you will be ok. Tell them about your concerns if you haven’t already. It’s important to them. 

    Good luck to you

  • Hi Blondie98,

    I had my RAI in July last year, you normally have a bedroom, bathroom and a sort of ante room where there is a screen that the nurses cannot come past. The rooms are normally light and airy and nicely decorated and mist importantly there is a call button for the nurse should you need to speak to them. My room had a small fridge so I bought in some snacks and juice. I loaded some films and netflix on my iPad and watched some comedies to pass the time, face-timed a lot of friends and  family. I was very anxious about swallowing the pill but its tiny and the nuclear doctors are understanding that you will be anxious about it. I thought I would feel really weird but it was ok, I drank as much water as i could and showered twice a day, I sucked lemon sherbert sweets to make your saliva glands work. It was good to go home when the time came, I just rested for a week but was soon out on my bike and walking again.

    Good luck with your treatment, it will pass quickly and everyone is very kind snd thoughtful in the hospital.

    xx

    Jan
  • Hi Blondie,

    I found the RAI wasn't as bad as I expected.  I had it in 2017. My pill was tiny. It was in a wee straw and you just slide it straight into mouth. It was quite small. I had to drink loads and shower often. They gave me anti nausea medication but I didn't feel sick at all. No bladder problems,  just had to pee a lot cos I drank a lot of water. They can advise you on how much water roughly. It's not good to drink too much either , I think.

    I watched TV, movies, read a book and spoke to friends and family on phone.  I brought old pjs and dressing gown and left them there for disposal. I had a small balcony, but it was December and freezing,  so didn't venture out. My room had cctv so nurses could watch me. Just had to remember to change in the bathroom. I brought a few nice snacks, lots of flavoured water and a face mask. Try and focus on doing things, eg reading, knitting, learning a language, a jigsaw (if you don't mind leaving it behind), anything really, to pass the time, and it'll be over before you know it. 

    Good luck 

    Ciara

  • Hello, thank you everyone for sharing. I am about to go through RAI on Monday. I was wondering when your allowed to stop self isolating after the treatment. As I have two young children that I can not be with until I am not radioactive. How long did you stay radioactive? 

  • I had to sleep alone for 1 night and then couldn’t be near children or pregnant women for 3 days. It all depends on your readings. Drink a lot to flush it all out - have a drink on the go all day. What 
    good luck! 

  • Thank you, that's reassuring to know. Thank you Blush