# RAI scheduled for 4/20/12



## sportdan30

At the request of Andros, and to be quite honest, to find a forum such as this to which I can share my experience thus far is very welcome. Thank you.

Unlike the rest of you, I've ignorantly haven't paid much attention to my thyroid levels so I can't really provide much information. What I can tell you is that my situation began back in 1999 while living in Chicago when I started experiencing extreme anxiety and panic attacks. It came out of nowhere and I truly thought I was going crazy. It was no fun driving home in Chicago rush hour while at a stand still wondering what is happening to me! It shook me to the core, and it's wasn't until I had blood tests did I discover I had a thyroid issue. It was quickly diagnosed through blood work and an uptake scan, and I was able to get my levels under control. Obviously I was hyperthyroid.

I moved back to St. Louis (where I grew up) shortly thereafter with my wife as we were done experiencing city life, and ready to move in to a home and start a family. For the next 12 years, my levels stayed normal and I actually was taken of my Synthroid for a year or two. Then slowly, I started having symptoms again and it was discovered that slowly but surely my thyroid was going to die off. I'd have to continue to increase my synthroid strength over time. That I was fine with and thought nothing of it.

About a year ago, during a routine physical or examination, my primary physician just happened to ask as he was feeling my neck if I had ever had an ultrasound of my thyroid. I told him no and he suggested having one just to see what if anything was going on. Why my Endo never suggested to me to have an ultrasound, I can't tell you. Anyways, I had the ultrasound and it came back showing three real small nodules embedded in my thyroid. My Endo told me they were too small to biopsy and I'd have a follow up ultra sound the following year. About three months ago, I had another ultra sounds and the right dominant nodule had doubled in size.

I had a fine needle biopsy (which was quite enjoyable...not) and of course the results came back atypical. My endo gave me a couple suggestions, but because I was already taking Synthroid and would be for the rest of my life, he said the best option would be a removal of my Thyroid. So, I had it removed a few weeks ago, and the surgeon told me everything looked great and didn't see anything suspicious. I started on 137 synthroid for four days. Well, I get a call a couple nights later, and they said they found a 8mm papillary carcinoma right on the edge of the thyroid. I was surprised, scared, and frustrated. I just wanted to be done, especially after the surgery.

The following day, I met with a radiation oncologist who spent a good 45 minutes talking to my wife and I. I would immediately go off my synthroid and follow a LID. It's been exactly two weeks and one day since I started the LID and off the synthroid. This morning, I went and had my TSH levels tested. I called to check on the results two hours later, and they said I was right on the borderline of 50. Thus, I'm scheduled for the RAI tomorrow.

So, that's my story. I'm very thankful my primary physician suggested my original ultra sound, and I'm trying to keep an overall positive attitude while the wife and I don't share too much information with our two children.

As I stated in another thread, I'm ready for the RAI and to get off the LID. I know this isn't the end, but I feel I've aggressively gone about treating this and hope for the best.


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## joplin1975

Welcome!

Just one more day...hang in there.  Then it's just a matter of re-regulating yourself and keeping up with the yearly scans.


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## Andros

sportdan30 said:


> At the request of Andros, and to be quite honest, to find a forum such as this to which I can share my experience thus far is very welcome. Thank you.
> 
> Unlike the rest of you, I've ignorantly haven't paid much attention to my thyroid levels so I can't really provide much information. What I can tell you is that my situation began back in 1999 while living in Chicago when I started experiencing extreme anxiety and panic attacks. It came out of nowhere and I truly thought I was going crazy. It was no fun driving home in Chicago rush hour while at a stand still wondering what is happening to me! It shook me to the core, and it's wasn't until I had blood tests did I discover I had a thyroid issue. It was quickly diagnosed through blood work and an uptake scan, and I was able to get my levels under control. Obviously I was hyperthyroid.
> 
> I moved back to St. Louis (where I grew up) shortly thereafter with my wife as we were done experiencing city life, and ready to move in to a home and start a family. For the next 12 years, my levels stayed normal and I actually was taken of my Synthroid for a year or two. Then slowly, I started having symptoms again and it was discovered that slowly but surely my thyroid was going to die off. I'd have to continue to increase my synthroid strength over time. That I was fine with and thought nothing of it.
> 
> About a year ago, during a routine physical or examination, my primary physician just happened to ask as he was feeling my neck if I had ever had an ultrasound of my thyroid. I told him no and he suggested having one just to see what if anything was going on. Why my Endo never suggested to me to have an ultrasound, I can't tell you. Anyways, I had the ultrasound and it came back showing three real small nodules embedded in my thyroid. My Endo told me they were too small to biopsy and I'd have a follow up ultra sound the following year. About three months ago, I had another ultra sounds and the right dominant nodule had doubled in size.
> 
> I had a fine needle biopsy (which was quite enjoyable...not) and of course the results came back atypical. My endo gave me a couple suggestions, but because I was already taking Synthroid and would be for the rest of my life, he said the best option would be a removal of my Thyroid. So, I had it removed a few weeks ago, and the surgeon told me everything looked great and didn't see anything suspicious. I started on 137 synthroid for four days. Well, I get a call a couple nights later, and they said they found a 8mm papillary carcinoma right on the edge of the thyroid. I was surprised, scared, and frustrated. I just wanted to be done, especially after the surgery.
> 
> The following day, I met with a radiation oncologist who spent a good 45 minutes talking to my wife and I. I would immediately go off my synthroid and follow a LID. It's been exactly two weeks and one day since I started the LID and off the synthroid. This morning, I went and had my TSH levels tested. I called to check on the results two hours later, and they said I was right on the borderline of 50. Thus, I'm scheduled for the RAI tomorrow.
> 
> So, that's my story. I'm very thankful my primary physician suggested my original ultra sound, and I'm trying to keep an overall positive attitude while the wife and I don't share too much information with our two children.
> 
> As I stated in another thread, I'm ready for the RAI and to get off the LID. I know this isn't the end, but I feel I've aggressively gone about treating this and hope for the best.


Wow!! You see? You are doing a great public service by sharing your story. I cannot tell you how many people I have seen or known over the years on various forums/boards who were told nothing was awry w/their thyroids ONLY to find out (thanks to pathology) that they in fact did have cancer.

Well......................I am sorry you have to go through this but am I ever so glad that they found it and you are receiving the best medical intervention.

What a story!!! But it will have a very happy ending; I am sure of that!

My thoughts and prayers go with you on the 20th..

Thank you again for sharing. You may save a life; simple as that!


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## sportdan30

Well, I received my RAI on Friday morning. The wife and kids are staying at my parent's house. It hasn't been too bad, but everyday around 1:00, I get extremely tired. So i've been napping for a few hours each afternoon. It's going to be difficult going back to work on Monday.

Today, I was able to start back on my Synthroid and ditch the LID. Thankfully, no issues as of yet with loss of taste or smell. I have noticed, especially yesterday sweating for no reason and also having a little bit of anxiousness. It might be from the salivary gland medication I was taking. I did have to take some anti nausea medicine tablets a couple times. They helped significantly.

I still feel very drained as I type this and it's been an hour or so since waking up from my nap. I look forward to getting my energy back soon.

P.S. thanks for the kind words Andros. It's all about being vigilant, having the proper trusted doctors, and being aggressive yet smart about caring for oneself.


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## teri2280

Good to see you!! 

When you feel up to it / have time, let us know how your first day back at work goes. I purposely scheduled my RAI with 2 extra days off work. I did this mostly for the fact that I work around food (dept. mgr. in a deli at Walmart) and want the radiation COMPLETLY out of me before I go back, and partly because I think that the extra 2 days will help energy-wise.


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## sportdan30

Will do Teri. I'm contemplating working from home tomorrow, as I'm concerned about getting overly tired. Also, an extra day away from my co-workers might be beneficial for both myself and them. I've only been at this job for a few months so I feel a bit of pressure to not miss too many days, although my boss has been very supportive and accommodating. After my TT on a Friday, I pushed myself to go in to work the following week a few hours for a couple days later in the week.

I do notice my glands hurting a bit more yesterday and today. I believe this is normal but it does concern me a bit. Also when I turn my neck to the right, I feel something jostle or pop. I suppose it might be a enlarged gland.


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## sportdan30

I have my first body scan scheduled for Monday. Can anyone give me any insight to what I can expect? Will I be told of the results that day or do I have to wait to hear from my radiation oncologist?

Thanks.


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## joplin1975

Basically, you lay on a table and have this large rectangular thing hover above your head...it slowly moves down your body.

I didn't get the full report (suppose I could have called an gotten it later), but I did meet with my radiologist before I left. He reported that there was a significant decrease in uptake, which indicated it was "working"...since it continues to work for a period of time, this wasn't considered final and is the reason, in part, for yearly scans.


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## Andros

sportdan30 said:


> Well, I received my RAI on Friday morning. The wife and kids are staying at my parent's house. It hasn't been too bad, but everyday around 1:00, I get extremely tired. So i've been napping for a few hours each afternoon. It's going to be difficult going back to work on Monday.
> 
> Today, I was able to start back on my Synthroid and ditch the LID. Thankfully, no issues as of yet with loss of taste or smell. I have noticed, especially yesterday sweating for no reason and also having a little bit of anxiousness. It might be from the salivary gland medication I was taking. I did have to take some anti nausea medicine tablets a couple times. They helped significantly.
> 
> I still feel very drained as I type this and it's been an hour or so since waking up from my nap. I look forward to getting my energy back soon.
> 
> P.S. thanks for the kind words Andros. It's all about being vigilant, having the proper trusted doctors, and being aggressive yet smart about caring for oneself.


Good to hear from you. Drink plenty of water (not to excess, of course) to get the kidneys to flush all toxins out quickly.

Rest, rest and rest some more. Monday will hit like a DRAGON! Yikes!!!

Bet you miss your family and they miss you!


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## sportdan30

Well, I had my body scan yesterday. Took about 35 minutes, and except for five minutes in which I felt a little claustorphobic, it wasn't too uncomfortable. I was happy it was over...or so I thought.

I received a call last night from the place I had it done. They said the radiologist would like for me to come back and take additional pictures of my intestine. It seems that there is some uptake in that area, and they need about 20 minutes of my time. So, now I'm a little concerned and frustrated. It's just never ending, and now I fear they found something....

I go back today at 4.


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## joplin1975

Well, dang. That does have to be really frustrating. I want to say that at least they are being careful, but I'm sure you are fed up with the "at least" statements.  Will be thinking of you...be sure to update us.


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## Octavia

Do keep us posted. Prior to my scan last week, they gave me something to...well...empty me out, so they would get images that were undisturbed by partially digested food that had soaked up any of the RAI. I suspect & hope that's what you're dealing with here.


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## Andros

sportdan30 said:


> Well, I had my body scan yesterday. Took about 35 minutes, and except for five minutes in which I felt a little claustorphobic, it wasn't too uncomfortable. I was happy it was over...or so I thought.
> 
> I received a call last night from the place I had it done. They said the radiologist would like for me to come back and take additional pictures of my intestine. It seems that there is some uptake in that area, and they need about 20 minutes of my time. So, now I'm a little concerned and frustrated. It's just never ending, and now I fear they found something....
> 
> I go back today at 4.


Oh, dear..................you must let us know. Keeping you in my prayers for all of this!

On the informational side. Thyroid tissue does travel. This is called ectopic thyroid tissue.

Thank goodness for the scan though!

Hope it is just a false alarm!


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## sportdan30

I had the follow up scan today. When the tech called my name and walked me back to the room, he said "ok, we're scheduled to scan your neck", and I interrupted him and told him that I was under the impression I was having my intestinal tract scanned. He said there must have been a communication error because it clearly stated that I was to have my neck scanned again. He confirmed this by calling the Nuclear Medicine doctor. Sure enough, it was my neck they wanted to scan. I think the miscommunication came in because generally if you're called back for a re-scan, 80-90 percent of the time it is for the intestinal tract.

So, I had the scan done and afterwards he had me wait to make sure the doctor reading them was comfortable with what he saw. It appears that there's a line of some sort in my neck area that he can't quite diagnose. It was there yesterday, and there again today. Now, I will say I had quite a bit of mucus both yesterday and today. My sinuses have been draining a lot due to the weather. Therefore, I had to swallow multiple times yesterday and a few times today while I was laying there. So, it could be that (which of course I hope) or it could be something entirely different (which could be bad). As the tech said, if it was cancer, it'd most likely be a spot and not a line. In any case, like yesterday it was inconclusive. More than likely, the Nuclear Medicine doctor is going to confer with my Radiation Oncologist, and suggest I get a cat scan. Lovely! It doesn't end........ So, I continue to worry, remain frustrated, and look forward to all these medical bills...NOT!


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## joplin1975

Oh, man...I'm sorry you are still on the roller coaster. I wish I had something more to say than "hang in there", but there it is...


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## Andros

sportdan30 said:


> I had the follow up scan today. When the tech called my name and walked me back to the room, he said "ok, we're scheduled to scan your neck", and I interrupted him and told him that I was under the impression I was having my intestinal tract scanned. He said there must have been a communication error because it clearly stated that I was to have my neck scanned again. He confirmed this by calling the Nuclear Medicine doctor. Sure enough, it was my neck they wanted to scan. I think the miscommunication came in because generally if you're called back for a re-scan, 80-90 percent of the time it is for the intestinal tract.
> 
> So, I had the scan done and afterwards he had me wait to make sure the doctor reading them was comfortable with what he saw. It appears that there's a line of some sort in my neck area that he can't quite diagnose. It was there yesterday, and there again today. Now, I will say I had quite a bit of mucus both yesterday and today. My sinuses have been draining a lot due to the weather. Therefore, I had to swallow multiple times yesterday and a few times today while I was laying there. So, it could be that (which of course I hope) or it could be something entirely different (which could be bad). As the tech said, if it was cancer, it'd most likely be a spot and not a line. In any case, like yesterday it was inconclusive. More than likely, the Nuclear Medicine doctor is going to confer with my Radiation Oncologist, and suggest I get a cat scan. Lovely! It doesn't end........ So, I continue to worry, remain frustrated, and look forward to all these medical bills...NOT!


Hoh, boy! I am sorry you are going through all this. The only good thing is that the doc is determined to find out what is going on. That of course is to your benefit.

Oh, dear!!!


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## sportdan30

Well, I got the results back from my body scan. Needless to say, I'm a little concerned. I was told to expect some uptake from the scan, and I pretty much knew I'd have some in the neck region because I had gone back to do a re-scan on that area. However, I was also told from my radiation oncologist that there is uptake in the upper chest region as well. That took me completely by surprise.

The next step to is to get a CT Scan of the neck and chest area to get a baseline. The doctor said that the body scan is a bit blurry and the CT Scan will be more clear. They will then re-evaluate in a year........which to me sounds like a long time! I asked him if I wanted to be more aggressive, could I get another body scan in six months. He said from his experience, that's a bit premature. I wonder is that because the radioactive iodine could still be working to kill off the thyroid cells in the neck and chest area?

He did indicate something about a thyroglobulin test that will more than likely be administered in six months. What exactly is that and what does it show? He said something about going off synthroid for a few weeks. Or another option was getting a shot of something.....my mind was running every which way so I didn't completely understand everything he said.

That's where I stand as of now. I simply cannot catch a break! I'm going through a full range of emotions and it's just draining on me.

Has anyone experienced or know of anyone who also had these same results I got from the body scan? I could really use some reassurance right about now.

Thank you.


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## Octavia

Yes...my body scan post-surgery was not clean. And my plan was to re-scan in a year...which came out clean. Your dose of RAI will continue working for several months on those cells that are showing up. (My oncologist told me it continues to work for a year...I think he was exaggerating.)

Thyroglobulin is often used as an indicator of recurrence of thyroid cancer. That's why they want to check that in 6 months or so. You would stop your synthroid so you can go hypothyroid, and your TSH will go up. The alternative to stopping the synthroid is to get Thyrogen shots (two of them, I believe), which will artificially raise your TSH prior to your thyroglobulin test.

You should consider bringing someone with you to your appointments because, like you said, your mind is going in all directions, and it's hard to really hear everything the doctor is saying.


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## sportdan30

Thank you for the response. Yeah, I highly doubt the RAI works for a year, but I'd imagine somewhere between 3-6 months would seem plausible.

What's driving me crazy is did the RAI even work at all if it is showing uptake in two places? I assume it did, but it's just a little unnerving!

Also, when they removed my thyroid and biopsied the 8mm nodule that was a papillary carcinoma, were the thyroid cells always in my neck and chest area, or did they scamper off when the surgeon removed the thyroid? Meaning, here you had a thyroid all in place, but after removal, do pieces then break away and move freely throughout the body? That's pretty wild...and scary. In addition, what are the chances the remaining cells are canerous when only one of the embedded nodules was cancerous? All these thoughts are going through my mind!

These are all questions I'll ask the doctor about. My CT Scan is scheduled for tomorrow morning. Good times continue....


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## Octavia

All good questions. At this point, so soon after your surgery, one thing to remember is that some (perhaps all) of the areas that are showing up in your scan are just plain old thyroid cells. As my surgeon and my oncologist put it...this is not a perfectly clean surgery, and there are bound to be a few cells left there. The RAI will kill those remaining thyroid cells regardless of whether they are cancerous, and it will be absorbed by all of those remaining thyroid cells, regardless of whether they are cancerous. That's why stuff shows in your scan. I hope that makes a little sense. 

Best wishes for a successful CT scan tomorrow!

Oh, and to answer your question about whether the RAI worked at all if things are still showing in your scan...yes...it's showing because it's still in your system (for however many months it still works).


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## joplin1975

My post RAI scan wasn't clean either. I don't think there was any uptake in any other region than the neck, but I could be wrong. I was just told the post-scan was "much better" than the pre-scan. But I still had remaining cells and my radiologist did mention the possibility of going for round two this coming September.

I was also told that while the RAI tends to do most of its work during the first 72 hours, it continues to work for "some time" after the therapy dose is received. I've heard/read any where from three to six months, so I'd bet that's why they are looking at more monitoring at the six moth mark.

I doubt surgery caused the spread of those cells. It would see more logical that they were there long before surgery. Google ectopic thyroid cells and that will explain more.

I'd echo Octavia's thoughts and say try not to get too, too upset. They will take care of this, one way or another. That said, I can appreciate how frightening it must be. I'll be thinking of you today and hope you'll have positive news to share after the CT scan. Good luck!


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## sportdan30

I received a call from the nurse today who said that the doctor wanted to speak with me. Immediately, my heart started beating fast and I felt light headed, expecting the worst of course.

What the doctor told me was that they didn't find anything grossly abnormal. There was no presence of a mass or metassis in the chest or neck area. He mentioned I did not have an ectopic thyroid. I do have a hemoglobin/fluid collection in my neck due to the surgery. I could have it drained with a needle, but it would more than likely come back. If I can tolerate the pain, he said he wouldn't mess with it.

He said the chest area looked good and there wasn't an enlargement of lymph nodes or glands. He did say that I would have to have a second dose of RAI in 6-12 months. The goal of course is to get a clean scan. He said that he'd lean more towards 12 months and at the same time he'd do the thyroglobulin test as well. If there was uptake after the second scan, then we would obviously further discuss additional treatment.

So, all in all it was a pretty positive phone call. I did ask him my prognosis and he said it was "pretty good", which I thought was strange! In any case, that's where everything stands for now.


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## joplin1975

Well, he could have said something a little more helpful than "pretty good"!

This all sounds good -- much better than masses in the chest, etc. It's frustrating to have to sit and wait when we all want to be DOING something, but...

Anyway, I'm glad things sound better.


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## Andros

sportdan30 said:


> I received a call from the nurse today who said that the doctor wanted to speak with me. Immediately, my heart started beating fast and I felt light headed, expecting the worst of course.
> 
> What the doctor told me was that they didn't find anything grossly abnormal. There was no presence of a mass or metassis in the chest or neck area. He mentioned I did not have an ectopic thyroid. I do have a hemoglobin/fluid collection in my neck due to the surgery. I could have it drained with a needle, but it would more than likely come back. If I can tolerate the pain, he said he wouldn't mess with it.
> 
> He said the chest area looked good and there wasn't an enlargement of lymph nodes or glands. He did say that I would have to have a second dose of RAI in 6-12 months. The goal of course is to get a clean scan. He said that he'd lean more towards 12 months and at the same time he'd do the thyroglobulin test as well. If there was uptake after the second scan, then we would obviously further discuss additional treatment.
> 
> So, all in all it was a pretty positive phone call. I did ask him my prognosis and he said it was "pretty good", which I thought was strange! In any case, that's where everything stands for now.


This is awesome news if he would have said, "Pretty darned good", that would have been better. But.........................I think he meant you are good to go; that's what I think!!


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## teri2280

Octavia said:


> Yes...my body scan post-surgery was not clean. And my plan was to re-scan in a year...which came out clean. Your dose of RAI will continue working for several months on those cells that are showing up. (My oncologist told me it continues to work for a year...I think he was exaggerating.)
> 
> Thyroglobulin is often used as an indicator of recurrence of thyroid cancer. That's why they want to check that in 6 months or so. You would stop your synthroid so you can go hypothyroid, and your TSH will go up. The alternative to stopping the synthroid is to get Thyrogen shots (two of them, I believe), which will artificially raise your TSH prior to your thyroglobulin test.
> 
> You should consider bringing someone with you to your appointments because, like you said, your mind is going in all directions, and it's hard to really hear everything the doctor is saying.


Late to this post being updated (no surprise since I'm back to work lol), but for a thyroglobulin test you have to be hypo too???


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## Octavia

Well...to be honest, I'm not 100% certain on this, but yes, that's my impression after my most recent research.


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