What happens 6 months post op?

[Liz94]

I'm going back to the endo in a week for my 6 month post op visit.  He mentioned to me, way back when, that at 6 months I was going to have to do another dose of RAI. A smaller one that would not require me going off meds but that I'd  have to get two shots prior to the RAI.  What exactly is this going to show?  And how stupid am I gonna sound when I refuse to  do it?  I've made a decision that I'm not going to have anymore RAI put into my body. Not even a small dose. I just can't do it and I regret doing it the first time. If the first time was "optional" why do we have to do follow up doses? I don't understand.

[shannon828]

What were the details of your cancer?  Was it contained in the thyroid?  Did you have any lymph node involvement?  What was the size of your tumor?  After your first RAI treatment, what did your scan show?  I believe all these factors have bearing on whether you need more than one RAI treatments.  

As for your 6 month follow up, I believe it should just be a scan to see if you have any "uptake" meaning any more thyroid cells in your body that could potentially have cancer in them.  The two shots you are having are Thyrogen.  This is a med that raises your TSH to the level that you need to be for your scan without having to go off your thyroid meds.  I don't think you are necessarily having another treatment dose of RAI, but these scans are to make sure that your cancer is managed.  If they determine that you need another treatment dose and you refuse it, I don't think they can "make" you do it...

[Patty315]

Hi,  i'm getting ready for my 4 year scan, which usually consists of blood work, RAI , shots,coming off your meds then the scan.
However this time my Doctor told me they now have a new process, which is as long as you have had one clean scan after RAI they only need to hit you with the shots then and ultrasound on your neck area . I would ask your doctor about this new process.
I was happy last week when I found out I didnt have to go thru the RAI, coming off the meds and of the night before the scan ritual.  

[Liz94]

My cancer was contained with no lymph node involvement. The nodule was 1.5 cm.  And after my first RAI I scanned clean.  He told me that RAI was optional for me but if I were his wife or sister he would encourage it. So I did it. I had 50 mCi.  I do NOT want to do it again. Big dose, small dose, ANY dose. It made me sicker than I've ever been in my life and I just don't want to do that again.

[amela321]

Probably what your doc is talking about is not a therapeutic dose, but a scan dose.  It sounds like he wants to give you Thyrogen shots to get your TSH up, rather than make you hypothyroid, then give you a 4mCi (I think that's standard) dose of RAI to use as a tracer for a whole body scan.  Using the RAI is the only way to get a whole body scan.  There are those doctors who no longer routinely use WBS as follow up, but use Thyroglobulin (Tg) levels and ultrasound.  It depends on the doctor, I think.  

Discuss your fears with your doctor.  Maybe he will be willing to work with you to find a solution you both can live with....possibly the Tg/ultrasound combo.  Don't let your bad experience keep you away from regular follow-ups, though.  Follow-up exams are an important part of long term management of thyroid cancer.

[nissah46]

I guess I have had a different experience with RAI.  My dose wa 200mci and I did have side effects but I was not miserable.  They were tolerable.  I feel better knowing they are doing the scan so I know the cancer is in check.  Without the scan I would always be wondering.  I get my tracer dose Wed.  and my scan Fri.  I had the injections of thyrogen on Mon. and Tues.  Aside from being on a boring low iodine diet it has not been bad.  Can't wait for a slice of pizza! Good luck, whatever you decide.