Hi
This is my first message even though I have been reading through messages for about a year.
I was diagnosed with CIS after spending a year being treated for bladder infections which of course was not always the case. It was only when I took things into my own hands and found a doctor who took time to do a Cystscope.
I have been fighting the battle for 4 years started out with BCG had 6 treatments they did not work Had 6 with Interferon next biopsies came back neg my doctor was not happy so he sent them to John Hopkins came back positive,so more treatments next biopsies came back neg but urovision postitive.
2 years ago inbetween all the treatments ended up with a massive embolism in both lungs lucky for me had a doctor who had studied a new procedure my family gave permission to try it was the first time they had done it. saved my life. I was off my treatments for 5 months when checked the cancer was back.
Have had BCG and Interferon maintenance every 3 months for the last couple of years.
The bladder is now very irritated no cancer but can only hold about 200cc instead of a normal 1200cc I am in pain as soon as my bladder starts to fill.They call me a bladder cripple I would try to live with the pain but am afraid the cancer will be back
I am now at the point where I will have the bladder removed March 6 :'( I dont want to travel a long way and my doctors only do the bag on the outside I considered the Indiana pouch but a longer surgary and starting all over again with another set of doctors.
I would like to know if anyone can tell me if they have had this type of surgary how long to get over it will life be normal.I am a very young 73 year old who is still active even with the pain.
Thank you fallon
