I was diagnosed with chronic lymphocytic leukaemia in 2014.
At Xmas 2017, a transitional cell urothelial carcinoma was detected on my left kidney/ureter, which I lost to surgery [before it spread, they said].
I had my remaining right kidney scanned in December 2018 and a lesion was detected on it. I am now to be re-scanned and have camera scoping to have a closer look at the lesion. Given my history, I highly suspect that this lesion is malignant, which will probably mean the loss of my only kidney and haemodialysis ad mortem.
Is anyone else in my situation?
How do you manage it?
I am 58 and receive care in the UK.
The care has been abysmally poor for the following reasons:
When the leukaemia was diagnosed, I was supposed to have been given a series of vaccinations to protect my health, because CLL floods the immune system with seemingly adult white cells that have no disease-fighting capacity. These vaccinations weren't mentioned to me either by the haematologist, nor my GP, even though the Department of Health has issued guidelines on this very topic. I only discovered I was supposed to have them by chance, after about ten months, when I was researching online. I then had to request them myself and when I expressed alarm at the failure of medical staff to properly take care of my health, I was told I was over-reacting!
After being diagnosed with leukaemia, I noticed a change to my bowel habit [including a toilet bowl completely covered in blood] and asked for a referral to a surgical clinic for investigation. I was refused this and told I was being overly-anxious. I went above my GP's head and got a scan arranged by the haematologist which revealed I had kidney cancer. Had I not done this, the tumour on my left kidney would have metastasised and I'd basically have been buggered and it would only be being discovered NOW, when the lesion on the remaining kidney was found.
As a result, I have no faith whatever in the doctors involved with my care. They give me no information about my condition. They do not include me in decisions affecting me or my care. My care is done to me, with little warmth or humanity.
My advice to anyone with cancer is to research your type fully and educate yourself. And to MAKE your healthcare staff follow up on/investigate any concerns you may have.
If you don't, they won't. We all pay for this care, one way or the other.
Don't let doctors let you down like mine did.
