To Neobladder or radical cystectomy

I think you mean you are having to choose between radical cystectomy or BCG? Neobladder is one of the possible urinary diversions entailed with cystectomy, as an alternative to a stoma (+ bag). 

If your consultant is recommending surgery, that is probably because they think it will give best chance of cure. As you say, BCG is risky, a recurrence might be muscle invasive (leading to chemo + surgery or chemo+radiotherapy) or might even become incurable, if spread outside the bladder. It is a difficult decision, as you say, you have to weigh up the pros and cons in relation to your own life and priorities. 

Usually, once the choice of surgery is made, then there is the decision between stoma and neobladder, although neo is not always possible. Neo is hard work at first, learning to use it and gain continence, more potential complications and possible ongoing issues with continence. If it works well, it is easy to manage long term.

My diagnosis was 'only' TaG3, but I opted for surgery for various reasons, including best chance of cure. With clear post op path report I was deemd 95% likely cured, am now 14 years post op & deemed cured. I did have neobladder and still have annual test to check all is functioning well. Happy to answer any specific questions about neo, though as female I have a slightly different perspective. Hope all goes well for you.

Hi George71,

There are people here who have one of the two (nearly wrote 'both" which is inaccurate!). In either case they remove the bladder, radical cystectomy is only medical-speak for that) by the way.

After that, the surgeons use bits of our intestines either to create

A. a stoma and a very small pipe to collect the urine coming from our kidneys which then drips out continously through the stoma - the hole left at the end of the pipe which is sewn to an opening in one's skin, or

B. a larger internal pouch which is a neo or new bladder to collect the urine until one is ready to excrete it (again through a hole in one's stomach, which I'm told is where one's belly button was).

(I hope you have been given documentation explaining all of this. If not Macmillan has an excellent set of information online on bladder cancer).

Mine is a stoma. I chose that route because I felt it would suit me better. My reasoning:

1. Tried and tested

2. Long perfected technology

3. Once you learn the technique after the operation you carry on (hopefully) for years.

4. After attaching a night bag one can sleep right through the night

Neobladder (and similar):

1. One has to train one's new internal pouch over time to increase the amount of urine it can hold

2. May have to use a catheter to empty fully

 3. It seemed a bit fiddly to me and I didn't feel confident I would enjoy the training part

As I suspected, the stoma and bag(s) have worked well for me and I am pleased with my choice.

Each type has its enthusiastic users and I expect others will give you their views.

It is now over 3 years since the operation and from the start I have had a good quality of life.

I made my decision very quickly during the meeting when I was told I had cancer and my bladder was being removed. As I had muscle-invasive cancer there was no other option. I cannot comment on BCG though would say that my treatment - chemo then operation - only took 4 and a half months, with recovery only a few months after that. BCG can continue for much longer.

I was also told that the 5 year survival rate for the operation was good which cheered my husband and me.

Good luck with your decision.

Latestart

Hi George71,Welcome to the group.I’m over 6 years on from a life saving radical cystectomy.Neo bladder was not deemed suitable but I had already decided on an Ileal conduit anyway.There are pro’s and con’s to each and a definite pro for a stoma is being able to sleep through the night.Prior to the op I was getting up every 10 to 15 minutes all night.Recovery from surgery can be slow going it usually takes a few months.You will find plenty of support and advice here to help you through it.We are all here to help.Best wishes Jane. 

Dear Latestart, 

Many thanks for you swift reply. I have been goibg through the booklets here and the Fightbladdercancer websites but it is very good tk hear from soneone who has experience of an external stoma.  My tumour has not penetrated the muscle wall but its aggressive nature to spread is leading to a full bladder removal but am concerned for the long term prognosis of a stoma, risk of impotancy etc. They said with full removal the was a better survial rate. 

Thankyou for response it is very helpful and I wish you all the best. 

Dear Jane,

Many thanks for your response. The sleeping through the night is a big factor and one I had gotten used to the frequent night trips but not as frequent. Do you have any issue with getting used to sleeping on one side or pain at the skin connection? 

Many thanks and best wishes

I met a woman just after my op who asked if I had a stoma. When I said yes she said 'my husband had one of those for 20 years. He's dead now of course, but it wasn't that that killed him!'

Maybe that will cheer you as much as it did me.

All the best,

Latestart

My stoma is on the right hand side and I have no problems sleeping on that side.At night you plug your bag into the night bag which unless you are passing a large quantity of urine you empty the following morning.You shouldn’t feel any pain at the stoma site unless you have any issues with sore skin from the bag adhesive.Sometimes people are allergic to the adhesive and may have to experiment with different makes of bag.The stoma is easy to care for once you are instructed by your stoma nurse.Post op I had to be able to change the bag unaided before being allowed home.Once you know how to care for the stoma it becomes routine.Jane 

Many thanks. 

Dear Teasswill,

Thank you for you message and all very usefull. Initially the neo looked a good option for me but I am nervous with G3 and retaining partial prostrate in case the cancer appears there in the future.Also all of the self catheters needed for rinsing. The catheter following the Turbt was very uncomfortable but probably a drop in the ocean to what is to come. 

Thanks again

There is so much to think about and take in at the start of the diagnosis.It usually gets easier mentally once you start treatment.I hope you will find this group helpful.