Radical cystectomy

Hi tatoogranny and welcome to the group. I've not had RC, so not much help. Just to let you know we have members here who have had different diversions and hopefully will be along to share experiences when they pick up your post. I hope all goes well. Best wishes.

Hi tatoogranny,
I had a Radical Cystectomy last year and it was 100% the right choice for me.
We are all different of course, and I am a male and assume you are female and so the operation and areas affected will be quite different.

You say reconstruction, so do you mean NeoBladder?
That is what I had and am so pleased with that choice .

As a 53 year old at time of operation, recovery was a steady process with no rush needed.

I was back playing golf within 12 weeks of op, and now nearly 18 months on am 99% back to pre-op quality in every aspect of my life.

Cheers,
Chasam

Hi tatoogranny,Welcome to the group.I had a cystectomy in Sept 2019.For me it was life saving as my cancer was rarer and aggressive.It is a big op and it can take time to fully recover.I felt better after 3 months but by 8 months I was well enough to go back to caring for my disabled mother.I had an Ileal conduit so have a stoma.There is plenty of advice,support and experience on here.Love and best wishes Jane

I had my RC age 57 & chose reconstruction. In terms of overall general recovery, not much difference between the two options. After a week in hospital with no significant complications, I was able to manage personal care when I got home but no housework etc for a while. Started going out to leisure activities 6 weeks post op & a phased return to work at 3 months. Back to all usual activities by 6 months but about 8 months before I shed end of the day fatigue.

If you choose reconstruction, it is hard work early on when you are still very tired and weak, while you 'train' the new bladder. You need to be prepared for initial incontinence which should gradually improve iver the next few weeks/months, as well as learning a technique for emptying. In the early stages you have to empty fairly frequently, including every few hours at night as well as emptying at least once a night for evermore. 

Having said that, I am very happy with the outcome. I need to rely on self catheterisation to fully empty, but don't mind that. I still don't like getting up at night but have got used to it. 

Hi Chasam

Thanks very much for your reply , i'm actually thinking of continent urinary diversion, (indiana pouch)  and at 60 have had my doughts over the choice so it's realy helpful to hear a positive response to the outcome and glad to hear that it was the right thing for you

Thanks again

Hi winkers60

Thank you for your reply, and i am in the same situation myself as I don't have a choice on the removel of my bladder due to aggressive cancer

Thanks

Hi Teaswill

Thank you for your reply, this information is very helpful to me on  making a choice which i was already considering but after reading the leaflet from the hospital was having my doughts so it's very good to hear of a positive outcome to this op, I know it will be difficult for a while but thanks again for your reply it's really apreciated

Has your surgeon actually offered IP? In the UK it's more often a different version called Mitrofanof pouch. I was interested in that, but my surgeon advised against, compared with neobladder, as more likely to need surgical revision later on. But they will do it in certain circumstances. I know IP is quite popular in the US.

My surgeoen hasn't offred me a neobladder but has done about 200 of these indiana pouch operations so i do feel confident with him, however I do have an appointment next week so i will ask about that before i make my decision 

I am expecting to be offered the same operation. My wife hates the idea & is desperately trying to convince me otherwise. I will follow this thread with interest.

Which stage is your cancer?