View Full Version : Anyone have a choice about RAI?
Catnap
October 31st, 2011, 04:29 AM
I think the protocol where I am (Australia, or could be by state not sure) is for rai for any tumour over 1cm. Mine was 1.1cm. I had TT and neck dissection with 7 lymph nodes removed, none malignant. No evidence of spread outside thyroid. I see my endo next week to discuss next steps but my surgeon thought I may get some imput into whether to have RAI. I'm doing some reading and really starting to believe that for my small tumour RAI is unnecessary. I want rid of all this junk but don't want to put my body and my family through this if the evidence is not clear on the benefits?
Has anyone here been given the option of whether to go for RAI? What did you chose??
joplin1975
October 31st, 2011, 08:46 AM
Can you get a thyroglobin test and perhaps a pre-RAI scan first? Thyroid surgery tends to leave material behind so it might be helpful to gather some additional information first before making a decision.
corn
November 17th, 2011, 03:26 PM
I think the protocol where I am (Australia, or could be by state not sure) is for rai for any tumour over 1cm. Mine was 1.1cm. I had TT and neck dissection with 7 lymph nodes removed, none malignant. No evidence of spread outside thyroid. I see my endo next week to discuss next steps but my surgeon thought I may get some imput into whether to have RAI. I'm doing some reading and really starting to believe that for my small tumour RAI is unnecessary. I want rid of all this junk but don't want to put my body and my family through this if the evidence is not clear on the benefits?
Has anyone here been given the option of whether to go for RAI? What did you chose??
I am right where you are at the moment. 11 months post thyroidectomy. Go for an ultrasound here in the next few weeks and decide then. I find that not doing it I always feel like I'm in limbo knowing I have remaingin tissues and cells what is the reoccurence rate of haveing RAI vs not having it? Do it now and may never have to do it again or wait and see what happens..Always on my mind, hate to have to go thru another surgery later...So yes I am right where you are, and wondering the same exact thing.
Catnap
November 17th, 2011, 04:53 PM
Hi corn, I'm not sure if I posted yet on here but I met with a nuclear medicine specialist who has advised me against RAI at the stage. I'd read the entire american thyroid assoc guidelines http://www.thyca.org/DTCguidelines.pdf and wad pretty convinced I didn't need RAI. The specialist I saw thought in light of recent research RAI was unnecessary. I've since had my first thyroglobulin test and it's already undetectable so we'll keep testing that and regular neck ultrasounds to detect recurrence, then have RAI if there is any indications of recurrence.
I don't know what the rate of recurrence is without RAI but I think the research is not getting consistent results. It seems to depend on tumour size, spread, age. Do you know how big yours was and whether it had spread beyond thyroid? I feel lucky my specialist was up to date with the latest research and had said no to it before I gave my opinion, but I would've looked for very good reasons to give me it if she'd said I should have.
Have you had thyroglobulin checked?
I am really comfortable with not having RAI after all I've read. I'm confident that they will pick up recurrence and deal with it if that happens. But I'll continue to read and keep myself updated on any new developments in this area.
Good luck, let us know how your meeting goes. If you are borderline read up, it might come down to what you are comfortable with, for some RAI might feel like that extra assurance it's gone?
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