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FDG Uptake

worriedson714's picture
worriedson714
Posts: 327
Joined: Dec 2019

So after my dad's last pet scan he has been confidently telling people that he thinks his cancer is gone . Based of the fact that his last pet scan showed uptake going down . Yet his oncologist still insists he has cancer but since his oncologist has been wrong before we just don't know . So my question is has anyone had FDG Uptake go down on a pet scan and it still ended up being cancer ? I'm glad my dad is happy but I'm worried he's going to get blind sided so hopefully yall can help me out . 

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

Have it sent for outside opinion/read.

worriedson714's picture
worriedson714
Posts: 327
Joined: Dec 2019

Been trying to find a place to do this every place I call won't do it unless my dad comes there for tests by them . And since my dad doesn't seem ready to travel for another opinion yet any idea's of who I could call that does this ? Tried to get Cancer treatment centers of america to look at my dad's scans and do virtual appointment they won't even do that . 

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

It's very unlikely that another clinic/hospital will take another scan and read it.  Most facilities use their own equipment and set their readings and machines for how their standard is - not some other facility.  If you are wanting another opinion, you are going to have to go there and get new tests.  It's frustrating, but this is probably pretty standard.

Kim

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

Thank you!  I learned something new.  I guess since I use a few different hospitals must be why I have not had this problem.

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

Some places do require you going for tests at their facilities, but there are places listed on

https://grandrounds.com/

that will give a second opinion based on existing items.   You pay a fee, and whatever is needed is taken care of.  I did that at one point.  

I also have a drug trial pending if/when my current chemo stops working.  They are using everything I have from MSK and re-read the scans.  Granted, it is not a second opinion situation.  They did run a couple of tests on tissue samples to check for certain markers. 

I had an extremely unpleasant situation when trying to get a second with one place, total disaster, but grandrounds made it easy.

 

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

that is just crazy.  Is this because of covid?

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