This time last year I was preparing for 6 months on Capectibine tablets for mopping up purposes after having part of my colon removed. In Late July last year a follow up CT scan was clear and I was told my cancer had gone even though my tumour count was still 5, and I was put on a 5 year plan. The nurses said the doctor would probably recommend a PET scan to find out why my tumour count was still high, but that never happened.
In October I had a routine blood test which showed my tumour count had risen to 10. A further scan showed suspicious activity around my right urethra to my bladder and I was referred to a urologist who carried out a cyscosopy and inserted a stent in December.That has left me with an overactive bladder. Still no mention of a PET scan at this stage.
A routine Colonoscopy in November was also clear. Further testing in January showed issues, and at last a PET scan was done. This has revealed several clusters around my colon area and now I’m about to start FOLFOX for 6 months tomorrow.
i am terrified as the doctor has said my cancer isn’t curable now, they can only control it. I would really like to know why giving me a PET scan took so long. If it had had been done back in July when the nurses thought it would be done, I’m sure I wouldn't be in this position. I’m not only terrified, I’m absolutely furious. I am firmly convinced that my case has been mishandled, and I’m suffering for it.
Hi ekimjo
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
It's not surprising that you're feeling depressed so it might be helpful to join the living with incurable cancer group where you can discuss your feelings openly. If this is something that you'd like to do, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
If your CNS (cancer nurse specialist) can't explain why the PET scan took so long to organise you might want to speak to PALS (Patient Advice and Liaison Service) as part of their job is to help resolve concerns or problems.
Sending virtual ((hugs))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
