Opting out of RAI treatment

I had half my thyroid removed in Oct19. A diagnosis of follicular cancer followed in Dec19. There was a delay till Aug20 before my second surgery and I then had RAI in Oct20. As you have probably been told RAI treatment is designed to seek out and destroy thyroid cells which may have been left over from surgeries. It was explained to me that is was a belt and braces treatment and because there seemed to be minimal evidence of cancer escaping to my remaining thyroid the main justification for my second surgery was to allow me to have RAI. 

We are all of course different in terms of outlook, cancer size and cancer spread so it has to be a personal decision. It was explained to me by my oncologist that she had no experience of any cases of cancer being caused by RAI. Google will probably say there is a very small risk. I was concerned about having RAI despite having a nuclear scientist as a relative but went ahead on the basis it would minimise any chance of my thyroid cancer reappearing. Incidentally the dose of radiation I received was about a third of the dose I would have received 20 years ago so it is more targetted.

I have no experience of someone deciding not to proceed with RAI but would encourage you to talk to your oncologist to hep you come to the right decision for you. I wish you well.   

I'm wondering where you found that post about the lady who decided to just 'live with' her lump. I'm also wondering if you've been able to find evidence that she still thinks that was the right thing to do.

There will always be uncertainty about whether things might have been different if you did or didn't do something. There will never be certainty, because nobody gets to live two parallel lives and try both options.

I was told by my oncologist - and I'm 11 years post-treatment so this was way back in the days when we got proper BIG doses, rather than the much smaller ones that are typical today - that the only people he knew of who had developed other cancers as a result of radioactive iodine were people who had such serious and widespread thyroid cancer that they would never have lived long enough to develop other cancers if they hadn't had the treatment.

I'll just let that sink in. These were people who would have died without the treatment and for whom developing another cancer was better (since they were alive) than not having treatment.

For most of us getting a low dose to 'mop up' any stray cells that the surgeon didn't catch with their scalpel, that RAI is out of our system so quickly that the chances of other cancers are minute.

These days RAI is offered much more selectively than in the past. If you're offered it, then it's the opinion of a medical team of mixed specialists that it's the best thing for you. I would say they know more than some woman you found on the internet who decided to live with her lump.

We are just about the luckiest cancer patients in the hospital because we have Radioactive iodine available to us. That's why thyroid cancer survival rates are so fantastic.