New to this , my question is NeoBladder or not?

Hello Chasam

Welcome to our group, the one nobody wants to join. Your diagnosis is the same as mine four years ago and I opted for conduit/stoma/pouch that I remain very happy with and will tell you more later if you wish.

I expect Teaswill will be along shortly to explain life with a neobladder. I regard her as the expert on that.

What I will say at this stage is that it is a very personal decision that only you can make dependent on your lifestyle. Nearly everyone I've met remains content with their decision, neo or stoma. Perhaps one advantage to the neo is that if it does go awry, you can convert to a stoma at a later stage though you might not want the additional surgery.

Meanwhile, I recommend that you avoid Dr Google as much of the information is misleading. The expertise lies right here on this forum.

CB

Hi Chasam, welcome to the group. My cancer was a lower grade than yours so not experienced what you are facing. As Crustybladder has said there are others on this site who can give you a lot of information to help you decide.

Whatever your decision is we are here to listen and help.

Best wishes Luce 

Hi Chasm, my diagnosis has taken me down a different treatment route but I certainly understand how difficult it is to think through the options. This is a brilliant group and folks will offer all the support they can. Sending best wishes at this tough time. x 

Thank you all so much for the replies.

I am not one for forums or social media (don’t do Facebook ,Twitter etc), and this is in fact the first post on any forum I’ve ever made, so excuse me If I get the etiquette wrong.

one thing I’m sure of is I will need support from friends and family, but will be equally crucial to have help from fellow members of this horrible club.

im off to play some golf now to relax and forget about things for a while.

cheers

CB is very kind, but of course I only have personal experience of my neo, plus what I have heard from others.

Neo is a challenge at first & you do need to be prepared for the worst, while hoping for the best. It is very complex surgery & more potential for complications. There is a period of 2 weeks or so while things heal & you have various tubes & bags. Once neo goes live, you have to 'train' it - expand it to a usable size & learn a new technique for urinating. This means expecting incontinence, going to the toilet every 2 hours (maybe every 3 hours at night) while still weak & fatigued, recovering from the surgery. As neo becomes larger, it should hold more & you can extend the time between voids and gain continence (though that is not guaranteed). I would say that on the whole men seem to do better than women but there is a risk that you cannot fully empty & will need to self catheterise. Some hosp require you to learn this anyway. I have to do it but it's no bother for me.

The aspect I have found hardest is having to get up every night to empty. There is a greater chance of leaking as muscles relax when asleep & your body has to learn new 'full' signals. Some men use a condom catheter to overcome this issue.

Having said all that, once you get past all that, which can take from weeks to many months, neo is great, easy to manage. Depending on intake, activity etc I can go anything from about 3.5 - 55.5 hours between voids.

So pretty much it's do you want the simpler, quicker procedure but wear a bag, or are prepared to put in time & effort to be closest to original function. Also, you do have to be prepared that when they operate they may find that neo is not possible for some reason.

Good wishes making your choice - it is a very difficult decision. Am happy to answer any specific questions as best i can.

Hi Chasam,Welcome to the group.I had a cystectomy 8mths ago but I chose an Ileal conduit/stoma.My story is different from the others here as I had already had over 30 years of chronic bladder disease ( Interstitial Cystitis) before being diagnosed with Squamous cell bladder cancer last July.I decided against neo bladder mainly because I’m prone to urinary infections and didn’t want to self catheterise.Having to get up in the night also put me off neo bladder.Shortly before surgery I was getting up every 10 minutes or so each night.Having discussed the neo bladder and the ileal conduit with my surgeon he said I had made the best choice for me going for the latter.I watched some videos on youtube of patients discussing the pro’s and con’s of Ileal Conduit and neo bladder and found them helpful.Whatever you decide you need to be as fit as possible before the cystectomy.It’s a major operation and recovery can feel very slow at times.Best wishes whatever you decide.love Jane 

Hello Chasam, May I echo the others in wishing you a welcome to this forum and hope that you will find it as comforting, helpful and informative as it has been for me. I check in and give it a look daily but I only reply when I feel that my experiences might help. I had an RC 30 months ago and a neoblabber diversion. I was diagnosed with T1 sarcomatoid bladder cancer and RC was the appropriate response. I feel very fortunate that my circumstances ( fitness level, path results from the turps and RC ) , rendered me suitable for the neo ,my experiences have been overwhelmingly positive. I am continent day and night and only need to get up once a night to void ( which is an improvement from my 2-3 visits prior to surgery.) I have never self catheterized or had to. The stats will show that for men, the need to self cath and continent issues occur in a small minority of cases. I was 15 years your senior when I had to make this decision  that you are confronted with. I was made aware that the surgery was a bit longer and the training would take some patience, but never a day goes by now that I’m not incredibly thankful for my choice. Aside from preferring to have a seat to void ( I usually only stand in a pinch , hiking in the bush or similar circumstances ) my day to day is no different than it was 20 years ago. At 53 years old you will have a very long , up close and personal relationship with whatever diversion you pick , so get as much input as possible , my experience is just one of many many thousands , so judge it for what it is .... just one man’s opinion. I realize that you are in a pretty dark space at present, but the light will definitely shine brightly for you again , and when it does ,  the many things that you may have taken for granted will sparkle as well. All the best from Canada. Orillia.

Thank you Teasswill.

I am a reasonably fit 53 year old, not too overweight and was still playing 5-a-side footy before lockdown, so am hoping that goes in my favour when recovery begins.

It is a tricky decision, but one that may be taken out of my hands when surgeon looks again next Monday (8th June).

if it’s feasible I do think I will opt for NeoBladder but do take on board your note about waking up from the big operation to find they couldn’t do it for whatever reason. Better to have that in the back of my mind rather than have a complete shock when I wake, so thanks for that advice.

I’ll let this post know my decision after outcome of rigid cystoscopy on 8th, and may well have more questions then.

cheers.

Orillia,
Thank you for your detailed reply from Canada.

it is exactly what I wanted, an opinion from someone who has been through what I am facing.

What is not in doubt is that my bladder is being removed, and looks like 15th June, so just 15 days away.

i am an upbeat, positive person and have had just 2 ‘feel sorry for myself’ days so far in this journey. Bound to have more but it is certainly reassuring to hear things like your day to day is not affected.

so thanks again, and I’ll maybe ask more after the surgeon looks one more time on 8th June.

chasam

Thank you for your reply Jane.

If I do go down the Ileal route i’m sure I’ll Have more questions.
and will work on fitness in the next couple of weeks.

chasam