False positive PET scan?

I have been in this very same situation on a number of occasions. You just need to go see them and see what they are saying and be assured that there are many tools in the Haematologists tool box.

we could second guess but that won't help and having been there, I know I hoped for the best and prepared for the worst, its all part of the coping strategy. The one thing you know for sure is they want to talk to you, in my case that led to a plan that was different to the one suggested when I walked in to the room.

So do think of the questions you want to ask no matter which way it goes as it is important any decision that's made is informed and you have a level of confidence that its the right decision for you.

John 

Hi

I had stage 3B Follicular which had transformed to DLBCL.  Following my chemo my PET was showing two remaining hot spots - one in my armpit and the other in my spleen,  I had a biopsy of my armpit and it came back clear, so the Consultant felt it was post-chemo scarring.  The spleen hot spot was tiny and I was told that could be scarring to, although they were loathe to do a spleen biopsy because of the risk of bleeding, etc.  Had two years' Rituximab which ended two years' ago and so far so good.

Jan

I really hope it turns out to be something like that, but I'm not optimistic given the number of appointments that are being done over the phone. I've been positive for ages, saying it's not going to be cancer, but with him saying he wants to see me, I feel like it's a bad sign. 

I had some unexpectedly good news today. The oncologist has told me I'm not in the clear just yet, but that the biopsy showed no sign of lymphoma. He said they got three good samples and they found granulomatous change. Not lymphoma. 

We're doing a watch and wait and he'll book a scan for two months from now. Need it to be the same or better. 

Thats really good and very similar to the route I took and the follow up scan confirmed no active disease, that's the scenario I was hinting at, really pleased for you you can breathe again now.

John 

Hopefully I can follow that path. 

It was quite bizarre to see how the hospital is right now. I'm in Melbourne, being treated at the Olivia Newton-John Centre. Most of the seating has been removed from the main waiting room and in the clinics, they have taped off every second seat to keep people at a distance. It's good to know they're working hard to keep the ONJ Centre coronavirus free.

Though for my next scan I have to go into the Austin Tower next door, which is where all the 'sick' people go. I wish I could do everything at ONJ. 

Great news Acacia, and this will help you turn the noise in between your ears down a few notches.

I am dealing with my wife saying “no excuse for you not to do all those jobs around the house that you said that you would do when you had time”

Take care.

Haha. I'm working from home for at least the next three months, so I'm planning to sort out my backyard. Though my hairdresser (who's also a good friend and lives in the court behind my house) just sent me a message saying "This is good news. Now just relax and grow some hair!"

 

Great news!

Jan