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My Tg is 14...body scan came back negative...now what

MLG
Posts: 52
Joined: Mar 2010

I posted some stuff last week about my Tg being elevated to a 14 from always being 0.2
1 1/2 years after TT and lymph node removal for papillary cancer.

My body scan and uptake scan on neck came back negative. My doctor is out of town all week and have to wait until next week to see if he wants to do anything else.

I put a phone call into my primary dr to get her opinion on what should be done next. (Haven't heard anything yet.)

I'm also checking into an oncologist at a cancer treatment center to see if I can go see him for a 2nd opinion of what to do.

I want to go prepared w/knowledge so if by chance my dr doesn't want to do anything for awhile then I will know what to say.

It seems like after the body scan then the next step would be a PET/CT scan...is that right? Is there anymore scans that might show if I have something going on or would the best thing be PET/CT?
Has anyone had there thyroglobulin go higher, done the body scan and PET/CT scan and still not shown anything?
Would that maybe mean that there is no cancer or would there be another test out there to do?
Thanks,
Michelle

butterfly123
Posts: 52
Joined: Feb 2010

Hi Michelle-
Did you have the tracer dose of RAI or full RAI treatment? Sometimes the tracer dose is not enough to show where the recurrent cancer is hiding? Where you on a strict low iodine diet? Assuming that you were, then yes a PET/CT would be the next step. Your endo may want to do other tests but, if it was me, I would personally do the PET/CT next. I have recurrent TC and I had a lot of diagnostic tests which were all negative. The PET/CT was the only postive one. Now that I know where the tumor is in my body I have routine MRIs.

Post TT and RAI treatment, an elevated Tg means that the thryoid cancer has come back. Is your Tg result of 14 while on thryoid meds? I would strongly suggest having the PET scan done. As I mentioned in my previous posts, my Tg is 6/7 while on thryoid meds (150 while hypo) and the PET picked it right up. Although, there could be a possibility that the PET may not detect the Tg source. What is your thyrogen stimulated Tg and TSH?

Sorry for all the questions...trying to help you :)

MLG
Posts: 52
Joined: Mar 2010

Don't worry about all the questions. I am so grateful you have been helping me.
I am assuming I was only on a tracer not the full RAI treatment. (Would I have had to gone hypo for 6 weeks to have the full RAI t.ment?)I had the thyrogen injection 2 days prior to the capsule.

My doctor never put me on a low iodine diet. Back 1 1/2 yrs ago when I first found out I read that you do that before the ablation.
My surgeon, one of the top ones here for thyroid cancer, said I didn't need to do it. He said they found that it didn't make that much of a difference.
When I got my body scan done I ask the people in the nuclear med department and they said they rarely come across a pt who has been on one.
Maybe it is something here in central Illinois that the doctors don't do.
I know if I have to go thru it again or another ablation, regardless of what dr says I am doing it.

But, after my TT my body scan was clean and my Tg level has always been a 0.2
My Tg level was a 14 while on thyroid meds.

I don't know what my thyrogen stimulated Tg and TSH was because they never took my blood during that period. I ask if it needed to be done again and they said no.

I put a phone call into my primary care dr, who is also highly recommended, to see if she has any insight on any of this.
Plus, while waiting for my dr to come back next week, I am also checking into getting a 2nd opinion from an oncologist who works in our town at Illinois Cancer Center. He has thyroid patients along w/others and want to hear what he would do.

The frustrating thing is the waiting.
If either of these drs wants to do a PET/CT is there any prep stuff that needs to be ahead of time so as to enhance the results?
If that comes back negative what then?
Also, what about me suggesting have my bloodwork done again? It has only been a month.
Thanks again!
Michelle

butterfly123
Posts: 52
Joined: Feb 2010

Hi Michelle-
I can relate to the waiting game and the frustration.

It sounds like you did have the tracer dose. Sometimes the thryoid cancer only shows up with the treatment dose (the tracer dose is not enough to show anything). But you could have non-avid RAI TC now. But you need to keep searching for the Tg source.

So are you doing all this testing off of one Tg blood test. There is chance that the lab messed up. You may want to have another Tg test to make sure. I have never heard of not doing the Tg and TSH blood test while going thru the thryogen shot process. The Tg result during the thryogen process will tell if the TC can be stimulated. As I mentioned previousily, my thyrogen stimulated Tg was 50. So my endo knew that we were looking for a lymph node or tumor somewhere since it was able to be stimulated. Also, the Tg level can be an indication of what to look for....lymph node or tumor or bone mets as examples.

When I had my PET I do not think that I did any prep stuff except fast beforehand. Some docs do the PET in combination with the thyrogen but it is not necessary. A PET for detection of TC is approved when the Tg is above 10 and there has been a negative WBS. You have both of these so I would personally push for the PET. If it is negative then you can do more diagnostic tests (MRI or CT deep neck lymph nodes, CT Chest, etc.)

Sorry if I am being blunt about all of this but I guess I have learned a lot over the last 18 months. When my Tg was first elevated, I was hoping that the blood test was wrong too. When Tg is elevated post TT and post RAI, it is recurrent TC. I am sorry you have to go thru all of this again. Please let me know if I can help.

MLG
Posts: 52
Joined: Mar 2010

I think what I am getting more and more frustrated with as time goes by is that these doctors here don't seem to be doing stuff that I hear others talk about.

Example...no low iodine diet, even before ablation...no bloodwork done during thyrogen injection.

I will be curious as to what this doctor wants to do when he comes back off of vacation and I will be especially curious as to what this oncologist is going to say. That appt. won't be for at least a couple of weeks because I have to get my records sent to them and then wait a couple weeks to get in.

I will keep you posted when I hear. You have helped a lot. It might be a week or two before I post but I will try and put your name in w/the subject so you will know to read it.
Michelle

butterfly123
Posts: 52
Joined: Feb 2010

Definetly keep me posted on how you make out and get your Tg tested again. The next few weeks will seem like forever but try to stay positive. If you have any questions in the meantime, please let me know. I am glad my experience is able to help you.

BellsAngel69
Posts: 104
Joined: Dec 2009

Indicates a reocurrence. A PET scan should be next. My Tg was elevated to 29 and the scan was clean. Six months later it was at 130, and another PET and Total body scan showed a reocurrence that didn't show six months earlier with my thyroglobulin at 29. Anything over 1 usually indicates a reocurrence. Please get a PET asap to follow up!

MLG
Posts: 52
Joined: Mar 2010

So along w/your body scan that came back negative, you also had a PET and that came back negative until 6 months later?

Where did the reocurrence show up at?

How long was it inbetween your TT/RAI the first time, and the reocurrence?

What did they have to do the 2nd time around? Did you have to go hypo again and then RAI?

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