# How long before RIA?



## aljack33 (Oct 11, 2011)

My Husband had his thryoid completely removed last Wednesday. There was a 5cm tumor and the cancer also spread to his lymph nodes. The doctor said that the cancer was very aggressive and also had a tall cell variant. I am wondering when the radiation iodine treatment normally should start. I called the encronologist and she is on vacation for 2 weeks and then is booked for another 2 weeks. IT would be the end of November before we could even see her for an initial appointment. Then I understand my husband would have to be on a low iodine treatment and off his thyroid meds before he could even start the radiation iodine treatment.

Should this be acceptable? Should we wait that long or go to someone else? I'm really worried that the doctor said it was aggressive yet it's going to be sometime before we can even see the endo.


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## Octavia (Aug 1, 2011)

The RAI will take about 30 minutes of the doctor's time, assuming your husband isn't getting such a high dose that he has to stay in the hospital.

Which doctor will administer the RAI? Will it be the Endo? (I had an oncologist do mine...)

Yes, most doctors recommend the low-iodine diet (great cookbook on thyca.org) for a couple of weeks prior to the RAI. (My doc did not "put me on" the low-iodine diet. I wanted the RAI to be as successful as possible, so I chose to do it anyway.)

And yes, he'll need to be off his thyroid meds for at least 2 weeks, maybe longer...the objective is to get his TSH level above 35.

Hang in there, and keep us posted!


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## CLRRN (Jun 22, 2011)

Hey there...

Six weeks after the TT (total thyroidectomy) is the recommended time period before they give RAI (based on what I've read and my personal experience). I'm sure there are others that will provide additional information

What thyroid med(s) did they put him on? He will need to come off those before RAI. I would suggest following up with the endo on her return from vacation to get instructions (stopping thyroid med(s), low iodine diet) or ask to speak to her associate/partner. My endo gave me an order to coordinate the RAI with the Nuclear Med department at the hospital-scheduling wasn't really an issue other than 6 weeks after surgery-I picked the day 

Again, most are on the low iodine diet 2 weeks before RAI and if he is on cytomel, he would most likely stop that 2 weeks prior as well as it's takes less time to get of the body(unlike other meds which can take longer). As if you're not overwhelmed enough, if your endo has access/has Thyrogen, your husband may not have to come off his meds at all but there is shortage worldwide and most facilities don't have it.

I just got my RAI on Thurs and it was a little of 6 weeks from my 2nd surgery (8/23). I stopped cytomel on 9/23 and started the low iodine diet and I will continue off meds and on diet until my whole body scan on Thur. You will see variations in the timing of resuming diet, meds and scans as well.

Hang in there.....

Chris


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## joplin1975 (Jul 21, 2011)

It all depends. I/my medical team wanted it all over as soon as possible so I was not put on replacement meds upon leaving the hospital and therefore could do the RAI three weeks after surgery.

My surgeon set it up and that actual dose was administered by the radiologist in the hospital's nuclear medicine department.

He will need to have an elevated TSH, therefore he cannot be on his thyroid medications. Mine had to be -- minimally -- 35 to 40 for them to proceed with the RAI which took about two weeks for me, but can take longer, depending on the person. I was not given instructions to follow the LID.

How's your husband feeling? I take it this means they didn't go back in and take out more lymph nodes? I hope he's comfortable! You may be able to call the surgeon and ask if he set up the RAI, if you want to proceed, but I think as long as he's getting it done within a month or two or three of the surgery, he should be just fine.


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## Octavia (Aug 1, 2011)

I had another thought about this... most thyroid cancers are very slow-growing. So if your husband's type falls into that category, then a few weeks won't make much of a difference. Hope that eases your mind a bit.

Most of us waited 6 weeks or so after our surgeries to get RAI. I think your husband's timing is "in the ballpark."


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## aljack33 (Oct 11, 2011)

Thanks for all your replies. I really am losing confidence in his medical team. We have had no contact with the endo other than my calling and trying to get an appointment. The surgeon said he would call but apparently has not.

My husband is on Liothryronine. I think that is a generic name for some of the meds you are all talking about. I don't even know. I'm just concerned because I don't think they see a lot of this in my area.

Our endo has no assistant. She is it in her practice and in our preferred provider insurance. She is only in our city 2 days of the week and we actually live in a bigger city in our state so I'm really concerned.

They removed some lymph nodes while they removed his thyroid, but the surgeon said he will need a neck dissection.

We go see the surgeon tomorrow. He said my husband's cancer is very aggressive and fast growing. He thought it grew at least a cm in the 2 weeks since the FNA and the surgery. That is why I am concerned. He said it was aggressive, grew quickly and is a tall cell variant with is a more aggressive cancer, so why is he not coordinating things with the endo? And why aren't we proceeding quickly. Sorry to vent. I'm just getting nervous with our quality of care.


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## joplin1975 (Jul 21, 2011)

I feel badly we've been unable to address your concerns directly. Particularly when you don't feel like they've been addressed by your husband's medical team.

I was curious so I did some reading last night and it does seem that the tall cell variant is cause for concern (more so than "regular" ol' thyroid cancer).

I'm wondering, since it sounds like he would need a full neck dissection, if they were waiting to do the RAI until after that second surgery?

In any event, I hope you get some answers today...thinking about you and your husband.


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## aljack33 (Oct 11, 2011)

Thanks, Joplin. YOu have all been so helpful. More so than his medical team! I am concerned with that tall cell variant as well. I don't think his team has seen that and that makes me nervous.

With regard to the neck dissection, from what I got is that happens after the RAI? I could be wrong. We are getting so many conflicting reports. I think the neck has to heal more from the thyroid removal.

Thanks, again. I am hoping we get some answers today as well. I had a very bad dream last night that when we went to the appointment today, my husband's surgeon died right in front of us. We were scrambling to get information on my husband and no one knew anything. It was so vivid and I think speaks a lot to how I'm feeling about his caregivers right now.


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## Octavia (Aug 1, 2011)

Wow - that is a very interesting dream!

You are right to be concerned. I do not see any reason why the neck dissection should be delayed to give his neck more time to heal between surgeries. They'll likely use the same incision, but make it bigger/longer. And based on my limited knowledge, I would think they'd want to do the dissection prior to the RAI, so they can remove all of the cancer they can before the RAI so the RAI can concentrate on the most stubborn cells.

Be sure to tell this doctor how concerned you are because of the tall cell variant, and push for speed, speed, speed. You may not want to mention the dream, though.


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## joplin1975 (Jul 21, 2011)

Octavia said:


> Wow - that is a very interesting dream!
> 
> You are right to be concerned. I do not see any reason why the neck dissection should be delayed to give his neck more time to heal between surgeries. They'll likely use the same incision, but make it bigger/longer. And based on my limited knowledge, I would think they'd want to do the dissection prior to the RAI, so they can remove all of the cancer they can before the RAI so the RAI can concentrate on the most stubborn cells.
> 
> Be sure to tell this doctor how concerned you are because of the tall cell variant, and push for speed, speed, speed. You may not want to mention the dream, though.


This is what I was thinking too -- 1) they could use the existing scar and 2) the RAI could "shrink" the residual cells making it difficult to find things during the follow up dissection. But, that's way outta my league.

Good luck today and keep us updated!


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## Andros (Aug 26, 2009)

aljack33 said:


> Thanks for all your replies. I really am losing confidence in his medical team. We have had no contact with the endo other than my calling and trying to get an appointment. The surgeon said he would call but apparently has not.
> 
> My husband is on Liothryronine. I think that is a generic name for some of the meds you are all talking about. I don't even know. I'm just concerned because I don't think they see a lot of this in my area.
> 
> ...


Oh, dear........................well at this time, I don't think the endo can do much.

I am so sorry to hear this but they treat aggressive cancers very aggressively and the outcomes are very good.

Perhaps they want to give your hubby some time to recover from the anesthetic and other stuff from the first surgery.

Just know that "both" of you are in my prayers and thoughts. We will be here for you throughout.


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## aljack33 (Oct 11, 2011)

Well to validate my uneasy feelings our my husband's medical team, we were supposed to have his follow up ppointment today with the surgeon. Turns out the appointment is actually tomorrow. The nurses told us it was today. they wrote down today on his discharge papers that it was today. We get there and they said that this is his surgery day. He doesn't do appointments today. But that my husband's appointment is tomorrow.

I am getting so frustrated. So, now we wait till tomorrow. My husband is getting very upset. But he is an inward type of upset person. He is really worried about this neck dissection. He hated this last thyroid removal surgery. I don't know how he is going to take another one. And not knowing when it will be.

He thinks their lack of communication with us is a sign that maybe it is not as bad as the surgeon originally thought after surgery? He thinks maybe he doesn't need the neck dissection now and that the RAI is not so important to rush everything otherwise they would be on it. Frankly, I think it is their incompetence showing and I'm getting upset. Sorry to vent and thanks for all your help.


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## joplin1975 (Jul 21, 2011)

Haven't heard from you since this last post (which makes me frustrated on your behalf!)...I'm hoping everything is ok and wanted to let you know I was thinking of you & your husband!


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## SnoodMama (Jan 11, 2011)

Yeah I hope everything is ok and you can get your husband to get his head back in the battle. It sounded like he was starting to try to wish it all away... A very normal, but unhelpful reaction. Actually it might be a helpful reaction to reduce stress, but unhelpful if you actually avoid treatment.


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