Bladder

Hi Jorvik,
Welcome to this group.
I’ve been posting occasionally on here for nearly 5 years now and never been the first to welcome anyone to the group that no one wants to be a member of.
So, welcome once more.

I am a big Neobladder advocate, because I had mine in 2020 and it has been amazing.
Your oncologist and team will no doubt tell you of issues that may occur. Different ones depending on gender.
I’m a 58 year old male and I could have had incontinence issues, erectile issues, self catheterisation issues, and others;but have not.

Obviously other people who have a Neo bladder have had all or a combination of those issues, but just letting you know that it is not always the case. 
And I also know that others have had a stoma and bag and could not be happier with their choice.

So if you do need to go down the radical Cystectomy path it is not all doom and gloom.

cheers,
Chasam

Hi Jorvik and welcome to the group, although sorry to hear the BCG has not been successful. Not had removal myself but if it comes to it for you, there are others here with various experiences and will be able to offer help. Best wishes.

Hi Jorvik, my OH had a new tumour already grown at his check six weeks after the first six BCG. So that turned into a second TURBT as fortunately they did the check under general anaesthetic. He was offered more BCG, bladder removal or Mitomycin as "equal options" in Sheffield. Wanting to avoid the strong risk of erectile dysfunction he asked to try Mitomycin and has had no more cancer in six years. Just to give you a thought of another option you could ask about, if the medics are not adamant that removal is really necessary in your case.

And you should know that for many people, BCG works like weedkiller on a path, a course kills one lot of weeds, more pop up so then you apply some more BCG.

Best wishes, Denby

 Jorvik I suggest you ask your specialist nurse about the pros and cons of urinary diversion vs. Neobladder. I am sure they will have plenty of useful experience. Leo

Thank you much appreciate your help 

Thank you 

Thank you that’s interesting I’ll ask at my next appointment much appreciated 

I'm female and had my neo aged 57. I chose neo because I felt that a bag would need emptying more often than was convenient with a long commute and demanding job. Neo does have more potential for complications compared with simple stoma and bag. It is hard work at first, 'training' the neo & getting used to how to empty it. You need to be prepared for some level of incontinence. Some manage quickly, others take months to get reasonable control. You might need to learn to self catheterise - depends on hosp protocol and how well you can empty neo. Nights can be harder to learn control, and you have to get up every night to empty. 

Having said all that, I'm very happy with mine. I can predict pretty well when I will need to empty - I can last around 4 - 6 hours depending on time of day and intake. Best wishes making your decision.

Thank you so much I am swaying to Neo but still not 100% I’ve got 3 more b c g waiting so see what happens them I have to make a decision thank you again 

Thank you