Hi....I have been advised I need a cystectomy......I have a choice whether to or not, wondered if anyone could share their post op stories......I have been given some scary stats about having it procedure done but be great to get any thoughts/advice here?

  • Hello there and welcome to the group. I have not had RC, but many here have and I am sure they will be along to share experiences. Were you offered any alternative treatments ? Best wishes.

    Best wishes to All,   rily.

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  • This is a common dilemma & has to be a personal choice (if you have any option), weighing up all the pros & cons in relation to your individual circumstances. The surgeons have to tell you all the scary statistics so you can give informed consent.

    I'm female, chose RC 10 years ago & have no regrets. Among other reasons, I wanted best chance of cure & no stress of continuing check-ups. All went well, no significant complications. I had neobladder (reconstruction), was in hospital minimum 7 nights. Recovery is long & slow, but looking back, it seems a brief period in my life. Am happy to answer any specific questions. 

  • Hi,Welcome to the group.I had a cystectomy in 2019 with an Ileal conduit.I didn’t have a choice as the cancer was aggressive and causing an obstruction in the bladder.There is plenty of advice and support here whatever you decide.I’m happy to help if I can.Best wishes Jane

  • I'm male. I had a Radical Cysectomy in January this year for BC stage 4. I'm recovered to most practical purposes (I can wash the car) & we walk 2 miles a day. I'm currently paused for immunotherapy treatment due to it giving me liver problems. I can't have an erection any more, but am aiming to see a specialist to get some more help. Pills are no good. meanwhile we have the horror of a CT scan at the end of the month.

    Best take stats with a pinch of salt. I was told before the RC that it would raised my chances to 80%. Post op, I was told my chances were 20%.