# One year out....



## sportdan30 (Apr 18, 2012)

I am a 40 year old male.

It's been roughly one year since I had a TT done. They removed a 8mm size papillary cancer as well. I did the RAI treatment and my thyroid levels are in a good place. I get checked every few months. My ED had a thyroglobulin test run a few months ago and the test came back looking good. He said my outlook looks very good and chances are that I won't have to do the RAI treatment again.

Fast forward to today. The RC assistant calls me and tells me that this month they'd like for me to get off my synthroid and prepare for another around of RAI. I was taken aback.

Shouldn't I request they run a WBS, US, anything first? I don't want to have to endure going off my medication for two weeks and back on iodine free diet. Not to mention having another RAI treatment!

I called my ED to let them know of the plan and hope he gets involved in the discussion of treatment options.

Any other questions I should ask?

Thank you!


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## joplin1975 (Jul 21, 2011)

Hi there.

Generally speaking, you'd have a WBS and then another round of RAI, if needed. However, you'd prepare for the WBS the same way you'd prepare for the RAI. For some, that means going off meds (I used thyrogen for the one year WBS and recommend it if its an option for you).

I think having another round of RAI without a WBS is a little nutty, frankly, but I can't help but wonder if there isn't a communication issue?


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## Andros (Aug 26, 2009)

sportdan30 said:


> I am a 40 year old male.
> 
> It's been roughly one year since I had a TT done. They removed a 8mm size papillary cancer as well. I did the RAI treatment and my thyroid levels are in a good place. I get checked every few months. My ED had a thyroglobulin test run a few months ago and the test came back looking good. He said my outlook looks very good and chances are that I won't have to do the RAI treatment again.
> 
> ...


Good to see you here and I will have to let the "experts" answer that one for gratefully, I did not have thyroid cancer.


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## Octavia (Aug 1, 2011)

joplin1975 said:


> Hi there.
> 
> Generally speaking, you'd have a WBS and then another round of RAI, if needed. However, you'd prepare for the WBS the same way you'd prepare for the RAI. For some, that means going off meds (I used thyrogen for the one year WBS and recommend it if its an option for you).
> 
> I think having another round of RAI without a WBS is a little nutty, frankly, but I can't help but wonder if there isn't a communication issue?


I agree with everything here.


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## sportdan30 (Apr 18, 2012)

Thank you for the replies. I appreciate it. I was an active member on here by the way a year ago this time. To be quite honest, I purposely stopped posting updates because I was ready to put this behind me, so to speak. I wanted to live a normal, healthy life again. In the back of mind though, I knew I wasn't yet in the clear.

So, when I got the call yesterday, the adrenaline kicked in again and my nerves started working overtime. Back to facing it......ugh!

I spoke at length today with my RC here in St. Louis. Honestly, half of what he told me I either didn't understand, or I was trying to comprehend everything he said. First off, he said it was my option to do a diagnostic body scan, which as was commented by someone here, I'd have to go off my meds, and take a low iodine pill. Even if the results came back all clear, he said the possibility of undetectable cancer cells could remain. He further said that 1/3 of those people who have these scans end up having a second dose of RAI anyways.

Thyrogen is an option. I was very happy to hear that. I don't think I could work efficiently nor handle home life without some kind of aid. He commented that studies show those who take the Thyrogen injections is 5-7 percent less effective than going off synthroid all together. I wasn't real sure what he was saying, but I will disucss this further with my ED.

I'm told I would be given a 100 millicuries this time. I think I was given a higher dose last time, but he didn't have that information in front of him. I told him I was nervous about having another dose of RAI again, but he said that you'd have to have somewhere between 600-1000 millicurries to worry about anything long term. I'm not real sure I believe him, but for the moment he put his mind at ease.

A couple times he did say because I'm male and I'm 40 (still rather young), that they treat this a bit more aggressively in men. As I reminded him, I had a thyroglobulin tumor marker test a few months ago. Even though it came back looking good, because I still had some uptake in some areas immediately after my initial RAI, he said that is another reason he'd recommend a second dose.

Thankfully, this would be the last RAI dose. The hope is that everything would come back clear. So, I guess I'm pretty much moving towards another dosage unfortunately. I'd rather be more aggressive than sit back and wonder "what if?"

On a day in which Roger Ebert passed away from a recurrence from thyroid and salivary cancer, I really shouldn't be second guessing things, should I?


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