RAI treatment soon, any advice?

Hi there,I had a total thyroidectomy recently for papillary cancer and I have my rai looming over and am due to go into have injections and treatment from 7th March. I'm quite nervous mostly about being away from family and what that entails, about the whole treatment including the uptake of the iodine etc and about the the treatment having an increase in developing other cancers in the future mainly breast cancer and or lukemia. At first I was reluctant to get the treatment as I was very scared of this. If anyone has any advice/ info/experience in this area I would really appreciate it! Lou xxx

11 Replies

  • Can't really help much other than tell you that my sister in law had a TT for the same reason as you followed by radiotherapy. That was just over 40 years ago and she has been fine in all that time, no illnesses other than the odd cold every now and again. She has stayed really slim and is incredibly energetic, walking, climbing, sailing, camping - you name it she does or had done it. She has rheumatoid athritis in her hands now so she has given up rock climbing.

    Good luck, I can imagine how terrified you are feeling. Hopefully someone else will come on who can help you more. Will send the best of vibes in your direction on the 7th though. 😊

  • Thank you that's very kind and very encouraging words that you have provided about your sister in law! Thank you very much I needed that!! 😄 xxx

  • You've got loads of tips and suggestions from everyone, hope that helps you to feel more confident. Does your hospital have a specialist nurse who is allocated to you and who you can call if you are worried about anything? A friend of ours is having treatment for prostrate cancer and they said they were given a specialist nurse who kept them sane at the beginning. 😊

  • Lou, when I had RAI I had to stop Levothyroxine for 4 weeks and Liothyronine for 2 weeks prior to let TSH rise >30 and avoid foods high in iodine. I was given a radioactive capsule to swallow. Drinking copious amounts of fluids was encouraged to flush the radioactivity from my system plus frequent showers. It's a good idea to take some boiled sweets with you in case of temporary dryness of mouth. I took magazines, books, phone and tablet with me to while away the hours. I was able to take home hairbrush but ditched pyjamas, flip flops, toothbrush and face cloth. Towels were supplied. Visitors were not allowed to cross the threshold into the room.

    Radioactivity was measured each day by the nuclear physician with a geiger counter and was low enough for me to have the body scan on the third day and be discharged. The scan took about 40 mins and doesn't fully enclose you so you wont feel claustrophobic. I didn't have any ill effects and was able to start Levothyroxine after the body scan.

    You'll be given detailed instructions on avoiding pregnant women and small children for 21 days, travel time restrictions, sleeping alone for a few days, not preparing food for others, using your own set of cutlery and crockery for a few days, double flushing the loo, not going to cinema, restaurants etc, not having dental treatment or hairdressing.

    I'm not sure what your injections are? If they are thyrogen you may not need to stop Levothyroxine but I thought thyrogen was only available in the USA.

  • Hi clutter, thanks! As per usual you have provided great info uour a star!!😘

    can I take a tablet and or phone wasn't sure about that?

    Have you heard that it's a good idea to have trip to the dentist for a good teeth clean?

    I'm having a low dose iodine aparantly, will I have to stay away from my daughter for 21 days?

    I'm not stopping my levothyroxine but going in for two injections on consecutive days prior to the tablet. I'm following a low iodine diet from today but stuck as to what treat. All my food in the freezer etc I'm gonna have to give to husband and daughter and cook separate meals for me. Why can't I eat dairy? I've bought rice milk even that's got sea salt in. Do I have to cut sea salt/salt completely...everything's got salt in it. I'm confused??

  • Lou, I was using my tablet and phone. I think you'll be advised to keep a few feet distance from your daughter for 21 days. This is why it is so difficult for people with youncg children to undergo RAI. I avoided seafood but didn't cut out dairy or salt. Perhaps its different having the injection. Google Low Iodine diet. I didn't see a dentist prior to RAI and haven't heard that teeth need a clean before hand.

  • Hi Loopyboo,

    I had TT last March and RAI in May. My experience was very similar to Clutters I took some cheap paperbacks from charity shops which could be left behind and binned. The room I was in had a DVD player but no wifi so took some old favourites to watch. Worth checking the facilities before you go. It is very important to drink a lot of fluids so take squash something to taste the hospital water. I found the hospital stay ok but the social isolation afterwards a little depressing. I was also more tired than I thought I would be so if you can prepare meals ahead and if you work do not go back too soon. You have to remember that you are radioactive so a risk to anyone who may be in the early stages of pregnancy so plan accordingly.

    Good luck in your treatment


  • Thanks! Great info!! Yes, I will try to check the room to see what they have. How long did you have to be in isolation for. I have a daughter who's nearly three and I'm not sure how long I'm gonna have to be away from her?

  • Had TT 13 years ago, for the very same reason and my children were small at the time, so it was a nuisance. I don't think there is strong evidence of RAI it causing other types of cancer, as it only targets the thyroid cells a bit like a designer drug I suppose. I don't regret having the treatment because you don't want any thyroid cells remaining. The main difficulty is getting your dosage of levo correct. I started on 150mcg daily and it has come down over the years. Now I take 5 x 100 and 2 x 125 per week. Do keep a check on your calcium levels as several years on I had to have a hip replacement due to loss of bone in my hips (over medicated). Don't be scared, thinking about it is the worst part of the treatment. You will need to drink loads of water to flush to stuff out of your system and of course no cuddles for a while! I had to sleep downstairs. However after saying all that the prognosis is usually very good indeed. Chin up, all will be well!

  • Thank you! I'm worried about the contact with my daughter. They have said that I need to stay in overnight then scan etc and see from there, but I don't know how it will work if I'm gonna have to go home at some stage. How will I keep my daughter away from me?

  • Not easy, my youngest was 8, so could explain a little. If there is anyone who she could stay with for a day or two it would save a lot of worry. x

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