I have a long medical history with various conditions leading to another but for the much greater part have had no pain or distressing symptoms. Briefly:
Late 1980s - Gall Stones, Gall Bladder removed. Blood tests didn't return to normal. After a few years of investigations was diagnosed with:
Primary Sclerosing Cholangitis ( early 2000's) leading to:
Liver Transplant (2006) leading to Post Transplant Lymphoproliferative Disorder (2013)
The PTLD was successfully treated with R-CHOP but not before my right Ureter was constricted leading to need for a Ureteric stent to be inserted and changed every 6 months.
During one change in 2022 cancer was found in my bladder, scrapped and cauterised. This was repeated for next few changes but eventually the stent could not get past the constriction leading to a Nephrostomy as an alternative.
The Urologists were wary of surgery to remove my bladder due to scar tissue and the constriction in my ureter being high up. So they passed me to the radiologists. Apparently surgery is still a possibility if the radio therapy does not work.
I have remained positive through my journey, achieved an MBA post transplant and a successful career as a Head of Department, continued working until the Lymphoma diagnosis (age 59) (after a transplant, I though that was "my lot"). I worked for my self for a couple of years (from age 60) until tax and law changes on the horizon made it more sense to sell up and retire fully in 2023.
Now I think I am very much in the last chance saloon. I hate the Nephrostomy (the bags fall apart or otherwise just leak - they are poorly designed) and I hate the possibility of urinary and faecal incontinence as side effects of the radio therapy.
Are there any real life stories (good or bad) that can be shared of radio therapy treatment for bladder cancer?
diagnosed bladder cancer
Tumour in bladder
New to group
Surgery