On 1/12/2007 Daisy Bear wrote:
It is with out a doubt the most difficult time in life! I have had one surgery to remove belly button and half of bladder. It has only been five months since and I had 2 CT scans one in Nov. and one in Jan.and they are showing thickening at the site of the surgery. I have 3 boys which makes this decision part easy , so I can contuine to be a mother. I am only 35 and wonder how my life will change with a neo bladder. I have been told this is such a rare cancer that the only cure would be to have the whole bladder removed at this point. I also had lymph node involvement and they will get as much of those as they can along with all female parts. I hope someone would be willing to respond back! I If feel so alone right now.
I had my bladder removed in 2004, a total RC. I also know people, bothe male and female who have had them removed also. In all cases the result does not affect your quality of life. It works well. You are goint to have to learn how to urinate and control your bladder. You will also in all probability have some leakage at night when you sleep, but nothing that is not manageable. I had my surgery at USC Norris cancer center. Whatever you do make sure you do it (if you need it) at a place that does a lot of them and where the doctors involved in the process are proficient at it.
It is going on almost 3 years for me and i do not regret my decission. My life continues as before with very minor changes.
If you need any more informatuon from me, I'll check the postings.
Luis