Bladder removal

Hi, my diagnosis was different, but given option of BCG or surgery, chose surgery. That was 10 years ago, so things have changed a bit in that often now you can have robotic surgery, although recovery and urinary diversions are much the same. It is major surgery, takes months to fully recover, but then you can carry on with life much as before. I was able to have neobladder, an internal reconstruction, but the stoma & outside bag are probably more popular. Pros & cons for both.

The flat cancer you describe sounds like CIS, which is the least responsive to BCG, or any alternatives, so surgery is most likely your best option. 

Feel free to ask any questions about having surgery & we'll do our best to answer. Best wishes.

Hi 

Than you so much for the reply yes it is CIS. And I know the best way forward is surgery it’s all so overwhelming at first so thought I’d pop back on here as there are always positive and helpful people around to amasser any questions. He did explain that I’m probably not a candidate for an internal option unfortunately taking so much in you forget bits so need to ask that one again.  

Dear Kwheat, my husband had BCG which didn't work in that he too had a recurrence, CIS too I believe. He was then offered more BCG, Radical Cystectomy or try Mitomycin into the bladder. Not having got on this forum until later on, I had no idea that many people have recurrences and have more BCG and just go on like this happily for years. Rather like putting weedkiller on a path, you need to repeat it every so often as a few new weeds pop up. [I don't use garden chemicals but it is the best analogy I have seen]. So like you we felt the BCG had 'failed'. And the doctors although offering 'more BCG' failed to explain why this could be a perfectly good plan. We were utterly shocked as we had no idea it could be serious enough to indicate such a massive life changing op as RC. So opted for the Mitomycin. This has worked very effectively in that he has had no further recurrences so far [it is still not guaranteed but this does not worry us] and he is down to 6 monthly checks.

So please do not accept that removal is your only other option unless your medics give you really sound reasons in your particular case. Even in these covid time patients are entitled to a second opinion if they want one. The chance of a recurrence becoming life threatening between checks is small, this is why they check regularly, so if this were to happen most patients could still get an RC later. 

Best wishes, Denby

Regular checks will not prevent an incurable recurrence occurring.  The problem is that no-one can predict your personal outcome, only quantify the risk. Each person has to weigh up the pros & cons, risks & benefits & make an informed decision.

Hi Denby 

I wasn’t offered  it as my only option but after having explained to me about CIS cancer I still feel the risk is to high not to have surgery. But thanks for the reply and o will speak to the surgeon about what you mentioned. But I’m sure because this cancer is flat and hard to detect the answer will be the same. But it’s good to read other stories and be able to have questions to ask

Your reply is so true and although I like to hear other peoples experiences at the end of the day you have to go with what you feel is right for yoursel

Hi Kwheat,My bladder was severely diseased well before cancer so it had to be removed.Neo bladder was not an option in my case so I had a stoma.I had a frank discussion with the surgeon a month before the surgery and found this helpful.As you say you do have to go with what is right for yourself and your surgeon should be able to advise.Love Jane

Thank you Jane every bit of information helps me through this. And it means more when it’s from people who have experienced it 

I was very apprehensive before the surgery but joining this group really helped.I’m happy to help if I can.Love Jane

I had surgery back in 2017, no other real option, but I've been clear ever since. I chose a stoma for convenience and haven't really had any problems. Obviously, there are risks, but by and large everything has been fine and my life has been ok. Please feel free to read my profile, and ask any questions.