Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.


Posted by

I am awaiting my consultant appt this Friday - 4 weeks after a TURBT showed the tumour was invasive - don't know how far in yet of course but bad enough to mean tumour is still there and I did not have mitomycin instilled after the TURBT.
Have had CT and MTI scans and doc told me I could be looking at radiotherapy or bladder removal.

Has anyone out there had a neo-bladder made? I have had urethral biopsies and if that is OK I would be a candidate provided cancer not too invasive or spread of course.

I'd be interested to hear other people's experiences on neo-bladders or pouches or stomas and bags.

I am 39 and female with a history of UTIs and voiding issues - (been self-cathing for 6 years due to complete lack of voiding)

Non-smoker, non-occupational risk, full time career, mother to 2 young boys and feeling rather angry

Christine R
Posted by
Hi there, welcome to this site. Hopefully there will be someone who can advise on what you are going through at the moment. I can understand your anger completely and this is the very place to let off steam if you need to. Many wonderful, funny people on this site. Hope you find the support you need. Best wishes, Christine xx
Mike On The Bike
Posted by
I had my bladder removed in March this year. I was offered a neo-bladder or a stoma. I researched the options for a long while and gathered a load of information. You might want to try the American Bladder Cancer Society for info. Also get in touch with the UROSTOMOY ASSOCIATION (google it). The secretary of the association is a woman and I found her SOOOOO helpful. They arranged for me to talk with folks with a stoma and pouch and neo-bladder users. I found this very helpful even though both were very upbeat about their choices as they gave me the fullest details of their regime regarding living with their option.

Things to bear in mind, I'm a lot older than you and a bloke.

I'd pretty much made up my mind to go with a stoma but the final clincher was a conversation with my surgeon. I asked him if I were his dad what would he advise; stoma. I can heartily recommend this guy, he is so attentive and thorough, I saw him every day in hospital and I have great confidence in him. Let me know if you want contact details for him.

I hope I don't slant this too much. The thing that also helped me make a decision is that a stoma uses 10 cms (4 inches) approx of your bowel, the neo-bladder uses much more. This chunk has to be removed from the bowel. The bowel tissue secretes mucus and salts, thats how it works. I get mucus in my pouches quite a bit. With a neo- bladder where does this mucus go ? Where do the salts go ? Either way, its quite a change to the life style and what suits one person may not suit another. Blokes may not have the same responses to each option compared to females. The stoma is a far more straightforward operation compared to neo-bladder and recovery is quicker too. I believe that neo-bladders require invasive maintenance from time to time.

Overall, I'm happy with my stoma but then I would say that wouldn't I. I'm still working out my regime and lifestyle some 16 weeks since the op. I'm still trying out new pouches and other stuff but by and large it doesn't really affect me if I'm honest and watchful of the contents. I've had a couple of leaks when out on heavy beer sessions but thats been due to my neglecting to empty it more often. I can work, ride my bike, swim take pretty strenuous exercise and generally do all most things I could do before but now, without any pain at all.

So, I guess you need to get as much info as possible about each option and weigh up the facts, both positive and negative. When you have reached a decision commit to it 110%, there's no going back afterwards.

All the very best with your situation. If you need any further info from me I'm always happy to help so send me a private message.

Cheers and good luck, Mike
Posted by
Hi Mike

Thanks for this - with your pouch does that mean you don't have a 'bag of wee' taped on the outside of you? That's what I'd rather not have - yet.
I'll check out the urostomy assn - so far have just been looking at cancer info - desperate to know what I am facing so I can move on to deal with what I am going to do about it! Appt is Friday.

Mike On The Bike
Posted by
Yep, got it in one. Comes in useful sometimes.

Can understand the reluctance for the stoma and bag, I was the same. Hope I've chosen the right option; so far it seems to be OK.

Best of luck for Friday.

Cheers, Mike
Posted by
Hi Mike

Its good to hear that you are getting on so well with your bags.

Im right on the point now where im having to make the choice myself.I am a woman 47.The neo bladder is no longer a choice because the tumour has appeared in the bladder neck.

So like you i was given 2 choices.Internal pouch or bag.

To start with my instant reaction was " i do not want a bag of pee stuck to my tum" and thought id probably go for the internal catheterisable pouch.

Then i started talking to folk and reading up on both ops.I also listened very carefully to my consultant (who is also a very careing and nice bloke).

The things i found out about the internal pouch put me right off.Never mind the fact that the surgery is so much more complicated and the hispital stay so much longer.
But even then a 45/50 % possible chance of the need for further surgery because of various possible complications.
Added to all the other factors that were mentioned.

Ive come up with an informed choice that the bag is the way i am going.

Reading your blogs have helped a lot. Reading up on this site and others has also helped.

At the moment i feel as if i have my head around it.

They are talking about doing the op in the next 3/4 weeks.

So we will see how we go

All the best Sue
Mike On The Bike
Posted by
Hi Sue,

Plenty of exercise, you can't have to much strength. I was also told to get my protein intake up to promote faster healing. I was given a diet sheet and I also got some high protein drink from the health food store. Talk to your surgeon about this I guess.

Like you I did loads of research and although I came across many horror stories with each option, neo-bladder or stoma and pouch, the odds considerably favoured the latter as far as I could see.

If you need any other info regarding my experience send me a PM.

Cheers and best of luck, Mike
betsy Mae
Posted by
Hi - I had a neobladder 2 years ago. Would be happy to discuss this if you wish.

Betsy Mae