Noooo to RAI after TT with small cancer non aggressive

Hello everyone...had a TT two weeks ago...had Hashimotos...antibodies in the 300's but tsh pretty normal...of course the found some small area of papillary is the thing...I don't want the radioactive iodine...he wants to put me through radioactive iodine..!!! He is making me hypo so my radioactive iodine will take doctor is sorta an as s...anywaY..what will happen if I refuse the radioactive iodine??? I don't want it..I have been reading non stop for days and nights...if the cancer was small...and mine was..and if the cancer did not didn't ..then a TT should be sufficient..

22 Replies

  • I am in the same boat as you right now. I will not do radioactive iodine. Period. I am on the cancer diet and doing the B17 with enzyme and zinc, along with other things and my tumor on my neck is going down. If your cancer is elsewhere, the cancer can grow from going hypo and then poisoning your body. This is my opinion of course. Most people will tell you to do radioactive iodine. But I am getting rid of my own cancer from what God gave us in nature and what the doctors won't make a profit on.

  • I wish I had been on this site before I had rai. I had large growth on my neck - non cancerous and was hyperthyroid and was told I had to have the rai. I didn't know there was any alternative medicinal product to shrink it. good for you!

  • Behind you 100% on that one.... You dont have to take it if you dont want to.... I certainly wouldnt.

    What will happen? Well, if the cancer hasnt spread and they have removed all of your thyroid tissue, then chances are nothing, what so ever, will happen.

    Worst case scenario, if they have failed to remove everything, is that the cancer might come back..... But with a good immune system, not one which is having to deal with being nuked, then you have a chance of fighting if you need to.

    Its your body, not theirs and its you that has to live with any consequences. The docs want a belt and braces approach to cover their own backs.

    Be buggered to being made hypo..... Demand some proper meds and tell them you are making up your own mind.

    Xxx g

  • Itsjakefromstatefarm,

    If the papillary cancer was found after TT it is unlikely that you were surgically ablated and may have a lot of remnant thyroid cells in the thyroid bed. RAI would ablate these cells and any in the body loosened during surgery.

    Many members have hemilobectomy and if they are not high risk for recurrence they retain the remaining thyroid lobe and don't have RAI.

    Your doctor can recommend RAI but can't force you to take it. If you are determined not to have it ask for a suppressive dose of Levothyroxine as suppressing TSH <0.1 will help reduce the activity of any thyroid cells in the body. A member who refused RAI found his cancer recurred a couple of years later and he then reluctantly had RAI.

    I had high dose RAI post thyroidectomy as I had Hurthle Cell carcinoma which is a more aggressive type. There was some thyroid activity on the gamma scan a few days later but 5 months later a lower dose RAI to do a whole body scan showed there was no more activity.

  • It's your body, so you decide what to do with it. However, whatever you decide, I would tend to adopt one of the many anti-cancer diet and lifestyles - just in case.

  • Be strong and follow your intuition. If you don't want rai don't have it - I didn't ! Same experience 13 years ago I had a small papillary removed followed by a near total thyroidectomy . They wanted me to have rai too as a belt & braces approach . I was terrified of what damage I would be doing elsewhere long term and told them I'd decided against it . It was really tough to do but I'm so glad now I did . It's your body you decide !

  • I laughed at your doctor being sort of an ass. In my experience that's what they are all like in that thyroidectomy /RAI loop. My nuclear medicine consultant reminded me of Dolores Umbridge from Harry Potter. And by the time I'd agreed to RAI I realised no one was talking about mopping up stray cancer cells, which is what I thought it was for, they just wanted to totally destroy my thyroid. I wondered why they hated it so much :p

    I was persuaded to have RAI by the long term reassurance that with no thyroid tissue at all a new cancer would be very easy to find and identify with thyroglobulin. And, I suppose, by the fact RAI didn't seem any worse than losing my thyroid in the first place. It did take 9 months out of my life, as each scan needed to be three months apart, usually one treatment and a follow up scan. But I had an additional scan because something weird showed up on the first one.

  • That's funny, I thought the Endo i saw, was like Gilderoy Lockheart from Harry Potter. He was incredibly smooth and completely incompetent.!

  • After my TT for a very similar cancer I was referred to Christies in Manchester where they were undertaking a randomised trial to decide whether outcomes for such non aggressive cancer types are better with RAI or just regular ultrasound checks. After the consultant had explained to me how doubtful they were of the usefulness of RAI in such cases and the reasons for the trial I decided RAI was not for me. Sadly this meant I had to decline helping with the trial but hopefully there will be some results published soon!

    It's been two years since my TT, and I have had ultrasounds every three months, but these are now annually. My Levo is adjusted regularly to keep TSH quite suppressed on as low a dose as possible.

    I hope you will be able to make your own choice and get the right support!

  • Well interestingly, I was told to keep an open mind and that I could not have an RAI if I wanted to, but I decided against it. My decision was taken partly because of my lack of faith in doctors and their ability to find any reoccurrence in time. I went through a lot and did not want to go over any of the horrible stress and hospital again. After I was diagnosed with papillary cancer, I was offered hemilobectomy and was told that there is a chance that they would have to operate again depending on what they see on the histology. However, my instinct and my countless research hours told me not to risk a second operation on the same place (very difficult for patient and surgeon) and not to go ahead with an ENT surgeon (offered by the NHS) instead of an experienced thyroid endocrinologist surgeon. So had a TT (privately) and good thing too as the biggest carcinoma was on the other side and it was of a follicular variant. So I would definitely have another operation. Long story short, it has not been easy but the RAI was the easiest hurdle to go though so far, and it was worth not having to be afraid of a reoccurrence. It is impossible for the best surgeon to completely clear the area of thyroid cells. So in my opinion, trust your instinct but keep informed of the risks (dry mouth mainly and 1% cancer elsewhere but without ever being able to know if the RAI was to blame vs cancer reoccurrence). You have not said how big was your largest carcinoma and what dosage are they offering you which should determine the decision in my opinion.

  • Thank u helpful post

  • My experience is that I had radioactive iodine for same condition when I was 33 yrs - am now 65 and have been fine. You must do what you think is best for you - just sharing.

  • I had radioactive iodine treatment for same condition when I was 33 - am now 65 and have had no recurrence or problems since. - just saying but you must make your own decision.

  • Thank u very helpful to me

  • Hi All

    I have Hashimotos and I understand the problems with RAI which I have not been exposed to but I have a number of friends that had been through the conventional cut burn poison route .

    I have to say that you all need to look to the best web site on the planet for this problem. Stephanie Buist is a Thyroid cancer sufferer but more importantly she is a cancer survivor due to the incredible work of Dr David Brownstein in making sure that she did NOT repeat RAI for her thyroid cancer and successfully treated her condition with Iodine !! She is now cancer free.

    Please check out her story and understand the reasons behind your problems with very simple solutions :

    Love and best wishes to you all


  • Best wishes to you...but be careful in my case I had hashi and cancer ...and thank u God.already feel so much better post TT waiting on RAI

  • May I ask if iodine is appropriate for use in people with no thyroid ?

  • Yes. Iodine is important for almost every organ in the body and if you listen to either Dr Flecha's of Dr Brownstein's lectures on You Tube you will understand that deficiency in this vital chemical results in a whole range of ill health including cancers:

    Best wishes


  • Hi,

    It's difficult to know if your cancer has actually gone just because they've only found a small carcinoma in your thyroid gland. The cancer cells could be in other parts of your body because most of the thyroid hormone conversion happens in other parts of the endocrine system, mainly in the liver. So, you could have the thyroid cancer cells in your liver and not know it until the radioactive iodine treatment if done and you've been scanned.

    I had my thyroid cancer removed three and a half years ago and only had my right thyroid gland removed because they couldn't biopsy it properly whilst I was under the knife. It turned out I had an encapsulated variant papillary of follicular thyroid cancer. According to my surgeon it hadn't metasticised because it was contained within a calcified nodule but that's not to say I haven't got any dodgy cancer cells elsewhere. They refused to complete a total thyroidectomy and RAI follow up treatment so, I live in fear thinking that it might come back. At first I was releaved to not have further surgery but I now know my risks and wished they'd just done a full thyroidectomy especially, as I've been so ill since and they cannot get my thyroid meds right.

    If you really don't want to go ahead with RAI then perhaps get a second opinion or ask to watch, wait and see. Papillary thyroid cancer is very slow growing and takes years to take a hold. My surgeon told me I'd had my cancer for 4 or more years and so waiting a little while wouldn't have made any difference. I had my surgery within 3 weeks of being told that I had suspected thyroid cancer and that wasn't long enough to take in what was going to happen and how it would impact on my life. I've been ill since the surgery that I've lost my job and I'll never teach again because my voice has been affected due to the nerve going into the larynx was cut and hasn't repaired itself so I keep losing my voice something, I cannot do without when you teach little kids.

    I hope this gives you a bit of information so you can decide what is best for you. Just remember you don't need to rush into anything and don't be bullied into something that doesn't feel right. I was rushed, pressured and had misgivings and I'd wished I'd followed my gut feelings rather be told you might die it's cancer. Not all cancers kill quickly, papillary thyroid cancers certainly don't! Bide your time, do your research and PM me if you need any support.

    Good luck.

    TT xx

  • ThyroidThora I understand how you feel ..but since I posted this I learned more .. I had five nodules and everyone of them was cancerous. Both lobes . And I had " high cancer promoting hormone?" Plus a horrible case of hashimotos. I have learned that just surgery isn't enough. I know of someone had a TT and still the cancer spread to lymph nodes. Only way to be sure is RAI. And check this out mind blowing...person told me hashimotos will still attack even if there is a small amount of thyroid cells remaining...I don't want that. !!! I want the thing killed !!! I am going forward with RAI...I think if I were u I might explore RAI. I was so sick when I had a thyroid

  • This is crazy...I don't know where you live...but if they found cancer you should have the right RaI ... surgery isn't good enough. But just leaving you feeling bad isn't acceptable. I was very very sick with hashimotos. I hope you get some better help soon

  • Hiya,

    I think the post code lottery applies where ever you live and some cancer hospitals do want they want and not necessary what the guidelines/accepted means of treatment are. I was told that if they found cancer they would wait a few weeks and remove the right thyroid lobe and then do RIA. This did not happen and I think it may have been a decision based on cost. I've just got to do anything and every thing in my power to limit my chances of it coming back.

    Have you decided what you are going to do? Hopefully, they will involve you in the decision making and if not shout and scream until they do.

    Good luck.


You may also like...