Papillary thyroid cancer and RAI: To have it or not

The big questions are:

1. For a papillary thyroid carcinoma sized 23 mm and removed in a total thyroidectomy, is it really necessary to have RAI treatment? A metastasised lymph node was removed also.

2. Are there other alternatives for someone refusing this treatment, even abroad?

3. For those who had RAI, especially those who got this treatment a long time ago: Looking back, would you still do it? Have you suffered those rare but dreadful side effects (other primary cancers, lung fibrosis, other)?

More data: I am a 25-year- old female with regular weight.

The long story is below:

Last week I went to an endocrinology appointment at the hospital and it was confirmed that I have a papillary carcinoma, after a total thyroidectomy performed +2 months ago. The doctor who consulted me sent me on my way in less than 15 minutes, having scheduled for me to have RAI within 3 weeks, telling me that I should suspend the use of levothyroxine and handing me a list of forbidden and allowed foods for the low iodine diet. All this without telling be about the RAI itself, radiation safety measures or side effects.

Now I am scared. I found online lots of people who did this treatment, even twice, and are not cancer free. And I found about the increased risk of suffering from leukaemia, bladder cancer and pulmonary fibrosis. I lost a grandmother to this evil disease, who killed her slowly but mercilessly and honestly between going through that or managing cancer as a chronic disease I would rather do the later.

I asked the Endo about details of the tumor, because I fear my case falls in a grey area, regarding the RAI treatment being optional. She mentioned it had 23 mm, but refused to print a report, telling me to request it downstairs. I live in Portugal and this is a pretty huge hospital and the system sucks. I am legally entitled to have it by 25th March but I already know they don't respect legal deadlines.

I already had to confront the hospital direction 3 months ago when I found I was moving backwards on the waiting list for surgery. After that I was scheduled a surgery right away but the surgeon bullied me before the surgery saying I was ungrateful to him (which I really don't get to understand - I guess most of his patients give him chickens and whiskey bottles and nice gifts to move faster on the list - yes, that happens in Portugal) and that I had nothing but multi nodular goitre.

And now this diagnosis. I feel lost, desperate and tired of having to send letters and confront people for not doing their work and respecting the national Department of Health guidelines, and I feel that part of this disrespect comes from me being a twenty-something.

10 Replies

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  • Candidabrites,

    I had high dose RAI 5 years ago as my risk factors, 2.8cm tumour, Hurthle cell carcinoma which is an aggressive follicular type and my age >45 were high for recurrence. I have been in remission 5 years now so it was successful. The only adverse effect I had after RAI is some dryness of the mouth.

    As your cancer metastasised in a lymph gland outside of the thyroid gland I think I would opt for RAI. Other primary cancers and lung fibrosis aren't caused by RAI as far as I'm aware.

    There are members here who had papillary cancer and only the cancerous lobe was removed. Those patients didn't have RAI which would have destroyed the remaining lobe.

    3 weeks is cutting it fine to take you off Levothyroxine, adopt a low iodine diet and expect your TSH to rise >30 to take up the radioactive iodine. I was taken off Levothyroxine for 4 weeks but was given Liothyronine (T3) for 2 of those weeks. The RAI I had was in a capsule which I swallowed. I believe it may also be injected. Because it was high dose I was quarantined in hospital 4 days for the protection of others while I was excreting the high radiation levels and had to observe limited contact & travel restrictions for another 21 days.

  • Thank you so much Clutter,

    It is good to hear from someone who went through this. You are right, the other cancers are not caused by RAI but the individuals who undergo RAI treatment have a slightly increased change of getting this cancers (bladder cancer is due to poor elimination of radiation and can be avoided almost entirely). Predisposition to other malignancies has been observed. Bellow are some articles with slightly different opinions though all of the recognise this side effects to some extend:

    ncbi.nlm.nih.gov/pubmed/210...

    tums.ac.ir/1395/09/11/2014-...

    iodineresearch.com/files/ch...

    I am specially concerned about this because several relatives of mine have gone through several different types of cancer, fibrosis and other nasty diseases. I am also quite put off because I came across people mostly through blogs that were not cured, even after two rounds of RAI and because the hospital does not like spend money: it is a pain to get an ultrasound, I did not get one before surgery, they relied solely on the one I had done privately 6 months before and now did not bother to test thyroglobulin.

    But thank you, your reply has certainly been more useful than the appointment with the endo.

  • Candidabrites,

    My feeling is that there is more risk of the cancer metastasising throughout the body and the predisposition to developing other cancers is a lesser risk. The RAI will ablate any thyroid cells left in the thyroid bed and any cells loosened into the body during surgery.

    It isn't common to have RAI refractory thyCa and I'm only aware of 2 members on this forum unlucky enough to have it. I had a second low dose 5 months later as part of a whole body scan to see whether previous remaining hotspots had disappeared.

    If your doctors are wanting you to have RAI they will think it premature to test thyroglobulin now. My thyroglobulin wasn't tested until 9-10 months after RAI as it can take months for it to disappear.

  • I couldn't fully understand the whole thyroglobulin issue, at least you explained it clearly. That statistic cheers me up also. Thank you Clutter!

  • I had RAI too, the only side effect I had was a headache for a while and then a strange metal taste every now and then . I was also given it in capsule form and kept away from other people for two days and then minimum contact for a further week. This was 4 months after total thyroidectomy for follicular carcinoma. That was back in 2013 and Since then only struggle is getting meds at correct level ,

  • Thank you for your feedback janey1968

  • I had my throid gland removed in 2001 I had papilliary thyca. I had RAI a few weeks afterwards and because I had small children, had to stay in hospital for two days in solitary. When I got home I had to sleep downstairs for quite a while and could not cuddle my children. I had no after effects but while in hospital drank water like it was going out of fashion to flush out my system. The treatment worked. One thing I would say is that I was on 150mcg of levo which ultimately let to me losing a lot of bone in my hips (no-one mentioned Vit D3 supplements) and subsequently over the last 16 years have had both my hips replaced. I now take 100mcg of levo. It seems to suit me but in hindsight have had quite a few side effects through being overmedicated. Keep an eye on your bones, eat well, and exercise. Parsley and other herbs are supposed to counteract radiation, so eat plenty of those after the treatment and when you get home. Best wishes.

  • Thank you Pepekins for your kind reply. I'll monitor closely the vitamin D and calcium afterwards. All the best

  • Hi Candidabrites, empathy I had thyCA papillary 13 years ago followed by RAI 4 times, 3 for body scans low dose and one high for ablation. Very similar experience to you in lack of medical care and all in the Middle East. No post surgery pain relief other than Brufeng! Treatment options not discussed and information not given. Was only 38 with three young kids and only went for a mammogram as sister had very aggressive breast cancer! Dr saw a swelling on my neck and a week later was in surgery. They booked me in for first RAI scan a couple of weeks later and no information given prior. I was supposed to pick my kids up from school after and was shocked to be handed a leaflet to say I shldnt have close contact with kids for 3 days. This was before lots of info on internet.

    I would say that given the fact that there was already metastise in your case and you have had full thyroidectomy that going the full prevention route with RAI wld give you the best chance of no recurrence. I too worried about secondary cancers but decided to focus on the one I knew I had rather than an unknown future. I had to be in an isolated room in a different country from my family so the not traveling after was a joke but they kept me there for a week. I made sure I was very strict about the non iodine diet to maximise the effectiveness of the ablation.

    I was a bit achy in my throats and headachy but other than tired no significant side effects.

    Since then have been cancer clear but the rest is an ongoing journey, have had many very good periods where barely seemed effected especially in the first decade post surgery.

    My kids keep affirming in their view I made the right choice maximising the treatment to minimise recurrence!

    Happy to chat in PM more if you need support from those that been thru 👍🏻

  • Sarahpk, I deeply appreciate your honest reply. I feel sorry for what happened to you. Fortunately for the time being I do not have children, because I believe that the isolation is painful both for a mother and her children, moreover when you are given no time to provide they are staying away from you with someone you trust.

    Today I have received my report, though not through the best means but instead from a friend of a friend who was able to print and photograph it. I feel like a thief but the truth is that any given person's medical records are his/hers only, like I was told by a friend in medical school. After reading it she advised me to really do the ablation because there is some evidence of neoplastic infiltration of adipose tissues in the region, and that is what I will do.

    I feel happy that you and the other people who commented on this did not suffer any major side effects. Thank you for the offer to chat, if I have any more doubts I will definitely write to you.

    All the best.

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