Experience of Cystectomy or Neobladder?

Question

At 66 I am faced with the prospect of losing my bladder due to cancer which has been treated for the last 12 years but has now progressed further.

There are two options, it appears: a neo-bladder formed from a section of the large intestine and a stoma (again using the large intestine) and external bag.

Do you have any experience of this, either yourself or with someone close to you, which you can share? I would be interested both in successes and cases where there have been complications. Much of the information I can find tends to emphasise the successes, yet my specialist has told me that I have a 1% chance of not surviving the operation and a 30% chance of there being some post-operative complications.

Any personal experience would be most helpful in deciding what my quality of life is likely to be.

Answer 1

Sorry to hear your news, it isnt good :(
I have not suffered this but as a nurse I have nursed patients after cystectomy (not had any experience with the neobladder operation so cant say about that).
Surgically the operation is very involved and it takes a good week to 10 days for the patient to feel anything like normal again. Once the healing is complete the biggest problem seems to be body image and coming to terms with the physical process of changing bags and keeping the stoma clean and healthy. I have seen probably 30 or so operations at various stages of healing (both on the wards and follow-up clinics) and long term the outcome seems to be good. All but a couple of people I dealt with had a good quality of life and coped with the restrictions very well. Some found the whole process of dealing with bodily fluids distasteful.
The complications are basically these...spread of cells whilst operating, haemorrhage, nerve damage, stitching breaking down causing leaks. Obviously immediate post op there is alo the risk of infection.
No doubt you have done a fair bit of investigation into this, but the site below is very good for info.
I hope it all goes well for you, good luck;