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.