Hi all.
I'm wondering if people have had experience with things lighting up on PET scans at the end of treatment or towards the end of treatment and had it come to nothing. I'm two spots down, one to go in terms of identifying anomalies on my last PET scan.
For background, I was diagnosed with Stage 4 NHL (Follicular/DLBCL) in October and have had six cycles of R-CHOP and one of Rituximab.
After cycle 7, my oncologist booked a PET scan that showed some new spots in the liver. He started talking about refractory lymphoma and said we needed a biopsy to see which of the two it was and that I would need to go on a trial or have a SCT or some other treatment.
I had an ultrasound to see if they could get an ultrasound guided biopsy done. That showed one spot instead of the three that showed up on the PET scan. And the one spot was in a difficult to access area.
They decided that the other spots may be in the stomach, not the liver, so I had a gastroscopy a week ago to see if they could do a biopsy. They found nothing more than some kidney inflammation, scar tissue and a gallstone -- certainly nothing to biopsy. There was a feeling it may have been the kidney inflammation that showed up, but the oncologist says he thinks that it was probably residual activity in the stomach.
Now I have to have the liver biopsy, probably in the next week.
Has anyone had things pop up on PET scans at the end of treatment, or close to the end of treatment, that turned out not to be cancer? I'm hoping that the biopsy just shows inflammation, but I'm not sure what conditions show up on a PET scan. I can't find anything that definitively tells you what sort of liver conditions can light up.
Hi again good to see you found yourself over to this little corrner of the Mac Community. and connecting in with folks.
‘False Positive’ scans?…… you will see from my profile I had a different type of NHL but the treatment journey can basically be the same, with the same issues.
My first FP was following my 6 cycles of R-EPOCH May 2014. I was having some ultrasounds as part of my prep for my first SCT and it showed a small ‘mass’ in my neck where my brick sized growth had been.
I was referred for a CT but this quickly highlighted that this was scar tissue as well as some damage from the massive hole that was made during my biopsy.
The second FP/Anomaly was in 21 Dec 2015 2 month after my second SCT.
A CT had light up a few (new) nodes in my lungs so had the “get in now” call from my consultant and was booked in for a CT Guided Biopsy on the 28th.
On the day of the biopsy I was all ready, they were about to put the line in but I asked them to scan me first as I was convinced that there was no problem!!!
After a huff and puff the Surgeon agreed for a scan to be done. There was a very long wait with a few doors opening and closing and some long discussions that I could not hear as my hearing aids were out.
Eventually she came back and here wards were something like “ well Mike, it looks like you do know your body very well. We have compared the before and after scans and I don’t know how you know but there is only one very little node left. Even if I tried, I would not get a hit on it and all the others are not to be seen - up you get, get dressed and you can go see your Haematologist as I have arranged for them to see you and lets see if they can explain this”
My Haematologist had no real explanation other than my body was still recovering/reacting from the very strong Chemo I had during my first SCT.
You will also see I have Asbestosis so I do have this checked every year. My Respiratory Consultant is actually a very good friend so I do get some ‘extra’ care but in these past 5 years the little node is still there and is not growing. “I don’t actually know what it is and it’s not Asbestosis related but as long as it is staying stable we will do nothing about it” says my friend.
Lets see if some of the others can bring their take on this.
Thanks for doing your profile as it does help a lot.
Aways around to help out
Hi, I think everyone’s treatment is full on but we just have to do what we need to do for the greater good.
Had to consult Dr Google for Gilbert Syndrome 
During my long years I have seen rather bizarre reactions to my treatments and I most likely have developed the ability to look past the initial ‘what if’s’ and wait for answers before ramping up the stress level and even then, why stress over things I can not control.
My focus was always to deal with the battle between my ears and leave the rest to my team.
Your reply on the other thread to Annie was great.
The whole area of keeping active is very important as it is hard to claw back muscle wastage following treatments.
SCT? back in late 2013 SCT was my only hope at the time..... but things are changing all the time.
But my treatment journey was a last throw of the dice, I could not have an Auto SCT as my Stem Cells could not be harvested so I did go into both Allo SCTs with active cancer cells but this is not the best way to go forward, but I had no mass so made it more possible for it all to work.
Lets look for a positive direction to be found for you.
Just remember to cover you face - I put a hanky over me face covered with a scarf. Put gloves on and don’t site in the crowded waiting rooms but they may not be that busy.
I was doing this for 12 months after my second Stem Cell Transplant as a simple cold could be as bad as this virus as I had no immune system.
Keep us informed.
