PET scan and the bad news that followed....

I had my PET scan in Nottingham. A PET scan shows up exactly how much of the tumour is active whereas on a CT scan you can only see the size of the mass not how much is active. I was given a small injection into a vein of radioactive ingredient and then was left in a room for 50 minutes while it worked through my body. I was on the scanner for about half an hour and it was pretty uncomfortable but nothing strenuous. The picture is of a PET scanner.

We were expecting the results back within a week or two I believe. However we were left waiting for a long time and I got increasingly nervous. However I was expecting them to say that it had shrunk down and that everything was ok.

When we were finally called into the consultant’s office it was bad news. His fist words were ‘we are worried.’ It turned out that the RCHOP had not caused a response. Or if it had the tumour was growing back faster than it was causing it to shrink down. I was shocked, I cried a lot in the consultant’s office and at home. For the first time I started to think about what would happen should the treatment not work.

It was explained to us that I would now be transferred to Derby for inpatient chemotherapy called IVE. If RCHOP was 4 on the chemo scale (out of 10) then IVE was 7! They said after 2 lots of IVE 4 weeks apart they would collect stem cells and do a stem cell transplant using my own stem cells. This would involve taking my stem cells, giving my ultra high chemo and then putting the stem cells back in to recover the bone marrow and blood. This scared the hell out of me but as long as it made me better I didn’t much care!!

I was also told that I would need to have a central line fitted as my veins wouldn’t take the IVE chemo. I was booked into Derby for the following Monday, this was Friday, so I had the weekend at home before my 5 day stay in hospital.