Bladder removal

Hi Old Guy15eacb and a warm welcome to the group. Not had this op myself so not much help, but many here have and will be along when they pick up your post. I am sure you will get plenty of support here going forward. Best wishes.

Hi Old Guy15eacb,Welcome to this friendly group.
I’m sorry your treatments haven’t worked.I had my bladder out 6 years ago.At the time I was 58 in poor shape with a bleak prognosis.It is a big operation but once you have recovered you can lead a full life.I live happily with a stoma.Feel free to ask any questions as a few of us on here have had this op.I expect the men will be along to share their experience.Best wishes Jane 

Hello OldGuy15rach.You are going through exactly the same thought process that I went through almost two years ago.i was 78 at the time with a history that included bypass surgery and an aortic valve replacement in the 10 years prior to my bladder and prostate removal.

I am now active, fit enough to walk 2 or 3 miles daily and sleep like a baby, albeit connected to a night drainage bag.The surgery is major and took me about three months to recover from and get used to my new life with a stoma. There were tough times in that three months but I came through with no major complications but with a lot of help from my stoma nurse who made home visits.I may be one of the lucky ones but feel I made the right decision and life is good considering all my previous health conditions.

There’s lots of stories and experiences to be absorbed on this forum. Read as many as you can before making the decision. Best wishes.

I guess it's also a question of what's the alternative, and is that a chance worth taking? They don't offer surgery if the risk is too high, so I think you may have some assessments to gauge your ability to withstand it before committing to the procedure. Yes, it does take months to fully recover, but it is a gradual process and if you don't lead an active life anyway, you may find you are soon able to do the same as before. There are possible complications but these are not inevitable. Difficult to weigh up the pros and cons - best wishes.

Hi Old Guy15eacb,

I'm female so can't comment on the prostate side though I have friends who have had that removed and seem to be managing well. However, I had my bladder removed at 69 and, coming up to 73, have had nearly 3 years of good quality life since the day I woke up in ICU. And as I was pretty weak before the op, that was not 100% certain. Naturally things weren't easy at first - it's a big operation - but it has all been onwards and upwards for me. 

Before diagnosis I was fit for my age and active, but after 4 cycles of chemo and some side effects from that or possibly Covid (a clot in my lung, which delayed the operation - but only for 2 weeks - and atrial fibrillation, I came through fine. The anaesthetists are in charge there and if they think you can do it they will help you a lot.

The stoma is easy enough to manage when you know how - the stoma nurses teach you in hospital and once back home. And the very best thing is the night bag which fastens to your day bag and lets you sleep straight through the night. My husband gets up twice at least each night and I'm sure he'd love not to have to do that. 

And getting active again after the operation needn't be too hard - simple walks did the trick for me and it's wonderful not to have the cancer hanging over you every day. That alone makes one feel better. Plus I haven't had any infections and people were telling me they would never have known I'd been ill after about 6 months when my husband and I reckoned we were back to normal in fact I felt well from very early on. People only know I have a stoma because I tell them - you can't tell just by looking at me.

From the day I was diagnosed, I have adopted an optimistic frame of mind and that has helped me and the family to just get on with things

The medics will give you a fitness review and answer all your questions before the decision (at least they did with me)  and I am very pleased I no longer have my bladder. 

All the best

Latestart

Only thing I can really add is the choice is ultimately yours to decided whether to go down that route or not. However the outcome is possibly better than leaving it and hoping it doesn't get any worse or the very worst happens. 

Sounds like you have already been through a lot and I understand that as do we all, but the choice is really down to you and the doctors to make realistically. 

Yes it's a long recovery as it's a big op that sfor sure. And health and age may not be on your side, it depends how you feel health wise and how you think it will affect you I guess. 

Sorry can't really offer much help but good luck whatever you decide to do. 

Hi, 

I can’t offer you any info but I am having my bladder removed in January. I’m just having chemo now. 
I’m younger at 56 and although it’s a big op, I’m confident it’s the right choice for me. I’m MIBC stage 2 and am doing whatever I can do to be rid of this. I keep telling myself that after recovery I’ll just be weeing a different way! Good luck x 

That's the way to look at it, I understand they like to preserve the bladder where possible but for me I think if it's a problem get rid of it, once it's gone it can't cause any issues again.

I'm already at the point where I want mine out cause I'm fed up of all this if I'm honest now. And there does not seem to be any end in sight yet. 

I know it’s such a personal decision. 
I’ve had the diagnosis since August and it’s had such an emotional toll on me. 

I’ve spoken with a well respected private oncologist, who is also part of the Royal Marsden team. With my case, he said I’d have a 50% chance of it coming back with chemo-radiation…and the radiation scarring may make the surgery/reconstruction more problematic. If I have my bladder removed I’d have a 20% chance of cancer returning (on a secondary site) . This is after having chemo (niagara protocol) in advance. I also asked him, perhaps unfairly (!) what he would do in my position. Without hesitation he said he’d remove the bladder. 
I’ve also been on Facebook platforms for people who have had the op…and the majority say it’s easier to deal with the IC, mitrofanoff (prob spelt wrong!) or the Neo bladder than they thought. 

Im going for the mitrofanoff as I have a great surgeon who’s done quite a few of these before. He may have to do the IC if he is having problems doing the mitranoff with my insides! The neobladder wouldn’t be a good fit for me because of the position of my cancer and I think more women than men struggle with this option. 

So logically I feel that (for me) having the bladder removed is the best option. 

Emotionally, I’m daunted by the op and the recovery but can’t let this stop me from pursuing that better outcome! That’s my viewpoint anyway! 

x

Do you have a date for the surgery yet ? If you are able to get as fit as possible beforehand that will help.It takes a few months to fully recover.I had an Ileal conduit as was not suitable for neo bladder and felt a lot better after 3 months.You just have to be prepared to be patient as recovery can be a bit up and down.I didn’t find the surgery nearly as bad as I feared.The recovery was tough but being alone during the pandemic played a major part.We are here to support you through it.Love Jane x