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Someone who knows alot about pet scans please help

worriedson714
Posts: 139
Joined: Dec 2019

So my dads new pet scan/ct scan can in today and it appears to be another gut punch for us . There is a increase in hypermetabolic activity in retroperitoneal fat and in the soft tissue where his bladder was . And 3 hypermetabloic soft tissue masses the biggest 3 cm . One of those 3 in the adominal wall and another is in his right erector spinae musculature at the level of the L2 vertebra . 

 

So idk alot of those words but its not good I am guessing since they thought my dad only had microsopic cancer left .  I called the onc to ask these questions of course he didn't return my call so hopefully someone knows about pet scans . Now before this we had one colorectal doc tells us the pet scan was a bad test cause my dad just had surgery two months ago . And scar tissue could also show hypermetabolic activity anyone know if thats true ? Also my dad has no tyroid misses his pill alot could that cause hypermetabolic activity in some areas ? One final question is I know pet scans show a celluar level so does that mean this hypermetabolic activity isn't cancer yet ? 

 

-UGH Now the onc office just refused to tell us what the pet scan means on the phone . So we are really freaking out thinking it's bad . Please guys any help would be awesome we got to wait until Weds. for the appointment . 

 

- New question my dad's cancer has always been called adenocarcinoma now there calling it neoplasm anyone know that that means ? 

beaumontdave's picture
beaumontdave
Posts: 1090
Joined: Aug 2013

Don't know if this helps, but I've had things light up on PET scans [hypermetabolic activity] that turned out to be nothing. One early on while I was in chemo treatment lit three lymph nodes, one under each armpit and one at the base of my neck. The Onc. couldn't make sense of it, even pondering about another cancer. That meeting left me feeling doomed, but it turned out to be nothing at all. It does happen, so hang on to a positive thought about it, as best you can. Good luck to you and especially your pop..............................................Dave

Ruthmomto4's picture
Ruthmomto4
Posts: 674
Joined: May 2013

Yes if you recently had surgery it can show increased activity that means nothing if it's in the area of the surgerys Not sure though how recent it has to be. It also has to have a certain amount of uptake before it's anything concerning if you look it up you should be able to find it.  Just uptake means nothing it's the amount. I would say don't worry but I know first hand that's impossible do your best though. I am hoping for good results 

worriedson714
Posts: 139
Joined: Dec 2019

Hmmm my dad's pet scan says nothing about how high the uptake is just says hypermetabolic activity thats odd thanks for your help thank you to dave helps hold onto some good thoughts 

Annabelle41415's picture
Annabelle41415
Posts: 6616
Joined: Feb 2009

I'm sorry it seems like your dad has gotten some news that is concerning, however wait until the doctor appointment.  I'm not familiar with PET scan readings, so I'm not able to give you any insight, but like beaumontdave gave an account of above, sometimes things light up and they are not what it seems.  Because the doctor doesn't want to tell you anything over the phone is not an indication of anything specific as most doctors won't.  Wishing your dad the best.

Kim

darcher's picture
darcher
Posts: 287
Joined: Jun 2017

Basically the PET scan uses a radioactive sugar that's injected and cancer being what it is, gobbles it up voraciously. The radioactivity makes it measurable. That's why they instruct people not to have any sugary items for so many hours prior to the test. Simply put, they want the cancer hungry and easily detecable. The term hypermetabolic refers to the increased rate that cancer consumes sugar over what a normal cell does. The test is usually accurate but under less than ideal conditions it can throw up false positives or the opposite if the tumor is small enough.

Not all doctors and nurses have good bed side manners. The first time I had a PET scan done, not knowing what it was for I asked the nurse doing the injection why they were doing this. I was already diagnosed with colon cancer from the colonoscopy. She said with a smile and very casually, "Oh, it's to see if there is cancer anywhere else".  I about had a heart attack!  

One thing you'll want to do is make sure you're on the authorized list for his medical knowledge. Every hospital has it but it may be called something different in each case. They may have given out some information the first time without checking and the second time they may have verified the names and if you're not on the list, they won't tell you. It's probably just a matter of getting your name on some form somewhere to satisfy a HIPAA compliance junky. They should have told you that when you called. It's not that they are hiding something terrible, it's that you're not on their right to know list.

   

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