positive pet scan

so my story, tt 2008, recurrance 2012 modified neck surgery, non-avid, recurrance 2013 tumor on my trachea neck dissection....2013 external beam radiation. i had my 3 month check up post ebr and my pet scan shows uptake in ny neck still. has not gotten bigger but i was hoping for no uptake. my thought and i will dissuss it with my doctor is that it my always uptake but be stable? did the ebr destroy the cancer cell dna and ability to replicate? i dont really understand so much of this can anyone shed any light on the subject? thanks

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this has to be so frustrating for you. makes me wonder if the ebr was worth it. watch and wait...again. try googling your very valid question and ebr. prayers :)

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What was the ebr aimed at? The tumour on the trachea? But did you say they operated on it? So they took it out? So what has gotten bigger?
Sorry - just wondering. What are they suggesting next?

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no bigger. 5 to 4.5 uptake on the pet. i did have surgery but did not have clean margins, so probably all microscopic. even with wait and watch i am ok. (i am not physically sick, i just know its there) i believe i may have gained another 2 years of being healthy and i am greatful for that. it may never grow or spread, i get my tg levels done on the 9th so that will tell me alot. the ebr was aimed to hit the mass on the trachea hard and of course included in the target are was bilat neck and sternum.

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Good Luck with your doctor and finding out what's going to happen next... Prayers on the way.

Be Strong and Stay Positive!

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Sorry - I see you said no bigger. Just trying to understand what can happen with ebr as it's been mentioned to me as possible therapy.
Are positive effects of Ebr more immediate than RAI? Which I understand can go on destroying cells over a few months?

Keeping everything crossed for your results . Keep us posted.

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@ lulla.... the ebr was not that bad for me, i had a really sore throat, thick secretion and burnt skin. i missed the mouth sores so that was good. i am not avid for rai. i think the effects from erb are more immediate than rai. my md told me that with a squamous cell cancer the radiation melts it away but with thyroid cancer it just leaves the dormant.

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Hi Mindy: I am sorry that you are having this uncertainity after all you have done to get healthy. I am wondering about your comment from your doctor about EBR leaving thyca cells dormant.....do you think that means that the mass is still there but no longer active? I also had EBR and I assumed that the ebr would erradicate the mass which was also on my trachea. Now I wonder........I never thought to ask.

I also am wondering about uptake on Pet scans. I am having a cat scan tomorrow and looked up prep for it and read the prep also for Pet scans....I was never told about the diet for the previous day and I wonder if some of my uptake is due to my addiction to sweets as I did not eliminate them as the online posts recommend. The radiology department only told me to not have caffeine and gum. I am going to ask the radiologist tomorrow about this. Like you I did have uptake in my neck but no one is concerned about it....and that includes Dr Ho at Sloan where I think you went for your EBR.

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@thirdtime i have a lot of the same questions....but i always question things. when i went to syracuse ny for my first pet scan they told me about watching my sugars and carb, sloan told me nothing but water for 6 hours.(no gum ect) if you eat sweets, the cancer cell will not be starved for glucose and will not uptake the glucose injection they give you prior to the scan...make sense? dr lee did tell me that about the squamous cell melting, i think it may always be there, i could be wrong but very sad when it went from 5 to 4.5 uptake post radiation and post surgery. i am in the city tomarrow until friday, good luck with your scans, i have my cat scan on thursday

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@thirdtime. that part about uptake to the neck makes me feel better...it must be normal

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@ thirdtime I takes my doctors about my test and scan I concreted my thoughts about how radion worked I was right. It should never spread or replicate so as it stands now the ebr is doing its job. How did everything go for you with your scans?

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Hi Mindy:
I too wondered about whether the thyca could have a new "spreading" after EBR. The oncologist told me that itismostlikely that the EBR did kill the cells in the neck that would be the cause of spreading BUT that since I already had mets to my lungs that there is probably some thyca floating around in me.......so I guess for me it could spread more. With you, given that I think you do not have mets you are probably sage from mets........we hope!!!!

But then I wonder....if EBR is so effective at shutting down the possibility of spreading then why do they not use it more since RAI does not seem to be effective quite as much as they lead you to believe?????

I get the results of my latest scan, a ct scan, tomorrow. I know the lung mets have probably grown but hopefully just a tiny bit.....y goal now is to not have to start the dreaded TKIs!

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@thirdtime i found out i have mets to my lungs i think last april via a ct scan. i just had another this january that has shown that it has grown. we are kinda in the the same boat, get a paddle out lol in box me if you want

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