3 years ago, following several turbos and BCG I had radiation and chemo which appears to have stopped the bladder cancer. However , I now have irradiation cystitus which has resulted in several episodes of heavy bleeding and the need for cortorization of virutally 80% of my bladder....making it virutally useless. The time has come for me to seriously consider a cystectomy but would like some first hand experience (pros and cons) of the post cystectomy alternatives. I unerstand the choices but really would like to have some help in un derstanding which is best for me.
Reading posts on the various forums it seems that so many (majority??) of those with a stoma and plastic bag suffer with leakage.....that horrifies me. But is leakage minimal or such that if you are out in public it is very obvious to everyone? Do you wake up in the night in a wet bed ??
If you opt for the catheter system - how frequently do you have to change caths?
I really would appreciate and comments - I need to do somethig it is just trying to decide what.....
As background - I am 85 (today Christmas day !!) male. Most recently had half a lung out with cancer - unrelated to my bladder cancer. I have acujte copd.
I have always been relatively very active - but not so for the past 4 years.....
Finally may I wish you all the very best seasons greetings and a healthy new year as possible.
Gosh, your operation was very long Jane, much longer than mine where they were removing more things! What skilled surgeons we have had to do our ops-it’s amazing.
Sarah xx
