Radical Cystectomy - Yes or No?

Months, yes, but it’s a gradual process. Incredibly weak & tired at first. I had no significant complications, 7 nights in hospital. Started leisure activities again at 6 weeks post op, phased return to work at 3 months. Took about 8 months to fully regain strength & energy. Seemed long at the time, but looking back, just a short episode. For me, well worthwhile. 

I actually chose surgery for best prospects of cure & have never regretted it. Living life to the full. However you do need to accept that for men, the surgery is likely to cause erectile dysfunction, although there are possible measures to address that.

If you have the surgery the recovery time is a few months sometimes longer.At 3 months post op I felt better.After 8 months I was able to care for my disabled mother full time but it wasn’t easy.I asked my urologist how long it takes to fully recover and he said ‘truthfully a year to 18 mths’.There will be people that recover much quicker than I did.If you do have the surgery there is plenty of advice and support here.I was helped greatly by joining this group prior to surgery.The fitter you can be before cystectomy the better.Best wishes Jane

Thank you for all the replies. I feel I now understand my alternative options and why my consultant wants to take me down this route. I also feel better about the post op recovery.

This group has already helped me greatly.

It’s good you are finding the group helpful.Life can be good after cystectomy despite it being major surgery.I hope you get the chance to discuss your cancer treatment thoroughly with your consultant.Best wishes Jane

I had the op four years ago and really haven't looked back. However, it's not the only treatment, you really need to ask why the op is the only alternative at the moment. I did,  and found the op to be the best alternative. Don't be overwhelmed ask.

I have an appointment with a consultant on 15th February to discuss my options an plan for ongoing treatment. I will update everyone after this.

1. I hope it goes well,you need to know all your options.Best wishes Jane

Hi Pringle

Good luck for the 15th and look forward to hearing from you

Love Inanna x 

Having visited consultant today I now understand the reasoning behind the suggestion of bladder removal. I feel more comfortable about this choice after discussing the alternatives and the possible outcomes.

The problem I now have is that I have been offered the choice of a Neo-Bladder or a Urostomy (ileal conduit). I have been given information leaflets for both of these but I was wondering about peoples experiences and opinions of both of these options. Any information would be helpful.

Hello,

 Yes, it sounds as if the time has come for bladder removal, .

My husband (late 40’s and reasonably  fit) has a neo bladder. The operation is longer (not every bladder surgeon can do it) and there can be complications (UTI’s, pockets of body fluid etc)  However, after only a few months he was completely dry in the day. He still has to wake up once or twice (the latter is his choice) at nighttime, but this isn’t a problem for him, but it can be for others. Something to think about.

One common misconception is that everyone with a neo bladder needs to self catheterise. This is not the case - my husband has never had to do this 9 months on. Overall he is pleased with it but it has been a hard slog. Also, just to say, a neo bladder can be turned into a Urostomy if need be in the future, but not the other way round. 

Best of luck. X