Hello All.

Ive just came across this site. I had my symptoms back in July 2014, My GP checked for Prostate Cancer, which all came back ok. I was put on the waiting list to see a Urologist in Nov 2014. The appointment came through by Aug 2015. In Nov, i had a biopsy, which was followed by a TURBT for bladder cancer. Unfortunately it has now gone muscle invasive cancer. I am now booked in for May 17th for a full bladder and prostate removal, and at the same time, having a Neo Bladder reconstruction. 

Any information will be greatfully received.

Thanks Gareth 

33 Replies

  • Good Luck with your choice of having a neo bladder done,i myself have one that was done around the time yours was discovered.For my lifestyle  it has seemed to be a good choice,my wife who is an internet junkie actually suggested the neo bladder option to the doctor who gave me the choice of an external bag or treatment with BCG (not recommended) The doctor seemed surprised we actually came armed with the extra information and agreed at once,just goes to show that information is the key to having any surgery done. I assume the extra cost and involvement of a specialist team deters hospitals from going the extra mile.My relatively young age (58) clinched the choice from the surgeons point of view and it was done with the best team in the hospital.The specialist surgeon at my hospital does only 4 or 5 of these ops a year,so its not a common choice here. As with any surgery it has had minor hiccups but nothing that cant or wont be sorted in time.



  • Hi Mark, and thanks for the feedback. Luck enough, my consultant explained the 2 options, stoma or neo bladder, and let me decide which one. As like  you, my life style and my age (56), opted for the Neo Bladder. I started Chemo in Feb, had 4 sessions then, would you believe it had a heart attack, ive recovered from that now, and looking forward to May 17th to get it done..... Hope your health is good.

    Regards  Gareth

  • Jeez Louise I did not have the option of a neobladder But to be honest I was overwhelmed and did not ask enough questions.I have a stoma and that is that..

  • Good Luck Gareth.

  • Thank you,,,, looking forward to getting it done!

  • Hi..I had my bladder removed over 5 years ago...I have Stoma and urostomy... If you have any questions please ask me

  • Hi Gareth

    Best of luck with your op and post-op recovery.  I don't have personal experience to help you with that.  What struck me about your post, was that it took around 10 months to get seen by a urologist and a year in total before you had a biopsy and TURBT.  That seems an unacceptable long delay, and cannot have helped your situation.  You may not wish to complain yourself as you have more important issues to focus on, but I hope that others can raise this and try to stop it happening again. 

    Best wishes


  • HI,

    I agree. I don`t know where you live, but here in the North East, I had very fast appointments and intervention.

    Sept last year I noticed blood in my urine,. Visited doctor next day who fast tracked me to Urologist at Wansbeck, Ashington. He performed a Flexible cystoscopy there and then, and discovered the tumours present in my bladder, all within 2 weeks of noticing the blood!

    TURBT was recommended and performed at the Newcastle Freeman Hospital in early October. Biopsy report took 4 weeks and showed that the cancer, although in the bladder had not penetrated the muscle, and was within the lining.

    They classed the tumour as aggressive and performed a second TURBT just before Christmas. Biopsy after this gave them cause for some concern, as they were surprised at the rate of re-growth, ( 3 centimetres in 3 months) They also mentioned a multitude of small tumours, which once again set alarm bells ringing.

    Radical cystoprostatectomy was my Consultants recommendation but due to my previous history of Diabetes, Dilated Cardio Myopathy, not to mention 2 strokes in 2014,the consultation team were concerned about my chances of surviving the op.

    Subsequent fitness tests etc placed me on a much fitter level than my medical history would suggest and Consultant recommendation was voted down and treatment by BCG was offered.

    I am now about to have my 3rd weekly bladder wash.

    I underwent a further flexible cystoscopy, before the BCG started and amazingly there was no visual trace of any tumours present at all. The 2nd TURBT must have been more successful than any of us expected.

    I am now on a scheduled 3 year treatment of BCG and am considered to be something of a challenge! The thinking is that if BCG is not successful, by 3 years time, When I will be 75 years old, I will probably not have suffered further fitness loss, and my chances of surviving the op would be similar to now. So a 2nd string to my bow, as it were. I am working as hard as I can to achieve better fitness, although the after effects of my strokes are hampering my desired progress.

    My cancer is on notice to quit!

    I wish you all the best results possible and keep the faith!


  • Hi David,,, thanks for your reply.

    I live in S, Wales, and being treated at The Royal Gwent Hospital. Yes 18 months i waited before i got a biopsy, by which time the cancer had spread. I was then given an aggresive form of chemo, after the 4th session i suffered a heart attack. As i am 56, and reasonable fit, they are now doing the surgery on May 17th.

    Hope you are well,,, and good luck with the battle

    Regards  Gareth

  • Hi Gareth. Was your heart attack related to your bladder cancer and or your bladder tumour procedure? 

    Wishing you luck n positivity for any future treatment. 

  • Hi Rita

    The cancer in my bladder is not a tumour, but high grade cancer cells, which unfortunately spread to the muscles. The bladder cancer and the heart attack i had, are not really linked. I was told my right artery was closing right up, which has been happening over the months or years, so it was waiting to happen.

    As i started chemotherapy early February, i had 2 cycles (4 sessions). The 4th session really hit me, so my blood count was right down. I was really exhausted, so thats when the heart attack happened. Being 56 and kept reasonable fit, it has felt like i run straight into a brick wall.

    My Oncologist Consultant told me it was good i had the heart attack when i did, as he said it could of happened in theater having surgery, then the outcome would have been a different story.

    2016 is going to be a bumpy road for me. I know im going to beat it, so here's looking forward to 2017.


  • Hi meghwyn I'm waiting for BCG and not sure what to expect if you have any suggestions I would be very grateful 


  • Hi Liz2597,

    Sorry about delay in replying.

    Like most, facing the unknown  and  apprehension is probably the biggest cause of worry.

    It was for me.

    However BCG was the route decided on, (they were worried that I would not be able to stand the cystoprostatectomy, due to my previous stroke/ cardio history)

    I was not sure that they were right, but followed their advice.

    At this stage (about to undergo my 4th of 6 bladder washes tomorrow) I am glad that I did. I too had no idea what would happen, but the procedure is very quick and absolutely straight forward.

    After the 1st one they wanted me to stay within the hospital grounds for a couple of hours, near at hand in case I suffered an adverse reaction, but I had none. and drove myself home after the requisite time.

    2nd and 3rd  washes passed, joking with the 2 nurses who performed the procedure. 15 minutes after arrival, I was on my way home via the local supermarket to do a bit of shopping.

    4th one tomorrow, and at the risk of tempting fate, no adverse reactions at all so far.

    NHS advice is to keep the BCG within the bladder for at least 2 hours, avoid public loos and pour a cup of bleach down loo and leave for an hour or so, before flushing. Oh, and males should sit whilst peeing to avoid splashes. Strict hygiene re hand washing and avoidance of drips as well, is needed. This is because the BCG is a live tuberculosis vaccine, and could cause problems if others come into contact with it.

    Very fine catheter is used, inserted without any anaesthetic which obviously is slightly uncomfortable. The trick is to relax as much as possible,"Lie back and think of England" as they say! But soon over and another week to pass before we do it all over again.

    Hopefully it will work.

    I have stopped thinking of my life with bladder cancer as a battle, more an understanding that following the expert advice and maintaining treatment will cause the cancer to give up its own desire to bother me. The power of positive thinking is certainly helping me along this eventful path. As I have said before I want to live long enough for something else other than the cancer to kill me, again being careful what I wish for!

    Good luck with your forthcoming treatment, I really hope it goes well for you and all others on this path.


  • Thank you David for your reply I certainly feel less apprehensive about my forthcoming treatment after reading your words .Like you I have a positive outlook and am not going to let something like this get in the way of me living my life as I want to . Wishing you well and will keep you posted .regards liz2597.

  • Thank you Liz,

    Just back home from 4th treatment .....2 to go, and still no adverse affect

    . Once again 15 mins in hospital before being thrown out!

    No worries re procedure now.

    Hope it all goes well for you, please contact me again if you feel that I can help, or just to compare notes and have a chat.

    Very best regards,


  • I'm impressed and motivated by your positive attitude David. Really like the fact you've given your cancer 'notice to quit'....BRILLIANT! Well done and best of luck with your future ongoing treatment and care 👍

  • Hi Chris,,,, Thanks for your reply.

    Yes i totally agree. The timing from the onset of symptoms to the biopsy was about 18 months. If i had the biopsy sooner on the onset of symptoms, it would have been caught sooner, therefore i may have only needed a TURBT, followed by BCG treatment. But because of the time lapse it became Muscle Invasive Bladder Cancer, therefore now need the bladder removed.

    On my recovery i may look into the delay, to help prevent this happening to someone in the future 

    Regards   Gareth

  • Hi Chris,,,, Thanks for your reply.

    Yes i totally agree. The timing from the onset of symptoms to the biopsy was about 18 months. If i had the biopsy sooner on the onset of symptoms, it would have been caught sooner, therefore i may have only needed a TURBT, followed by BCG treatment. But because of the time lapse it became Muscle Invasive Bladder Cancer, therefore now need the bladder removed.

    On my recovery i may look into the delay, to help prevent this happening to someone in the future

    Regards Gareth

  • The delay in treatment is criminal I would contact board of physicians

  • Hi Gareth wishing you well with your treatment and recovery 

  • Thanks for that,, Im looking forward to it, with a positive mind!

  • That time line for app. Is awful...I seen my doctor uroligist and operate in 3 weeks

  • Hope all goes well !!

  • Good Luck Gareth 👍🍀

  • Hi Gareth. my name is derek. good luck on the 17th may. I have had a stoma since 2011. we were given the option but thought it would be easier if i went down the stoma road. I have had my kidney removed in 2010. then they found 22 tumours in my bladder, they could not give me chemo as the lining of my bladder was so thin. At the same time they found i had Prostate cancer. so removed both together. hope you are not to down. as i have been but i am 5 years in remision. hope all goes well. GOOD LUCK.  

  • Hi Derek

    Thanks for the reply. I am not to down, i am actually looking forward to it, because i know i am going to beat it. It is good news that your 5 years in remission.

    Thank you ,,,, Gareth

  • Hi Gareth

    So sorry to hear your story, we all have completely different stories to tell so it is quite difficult to give any advice on the medical side obviously

    But I can tell you that my husband at 72 had his prostate remove, he was in hospital for a week and then had three monthly checks, he is now completely free and is really happy that he did the check up even though he had no symptoms.  I do hope that all goes well for you, I think it's important to share all these things with each other, it helps to take away the fear and could even save a few lives if others got attention immediately because they read something that you or I or anyone else wrote .

    Take care. From Pam J x

  • Hi Pam J

    Thank you for your reply. Thats good news for your husband,,,, and you,,,, because now i see how worrying it is for family and friends, and hope he is well. Yes i do agree with you, it is good to share experiences. I know i am having my bladder removed, and also my prostate, just in case. And then having a Neo Bladder reconstruction.

    I am looking forward to it, surprisingly, because im going to get that all clear within months.

    Take care Gareth

  • Hello again Gareth

    I will be thinking about you on the 17 th May and I know you will be fine ..I and all the others on here will be looking forward to hear how you are doing, so you think of us on the 17th as well, ok.  

    Bye for now, I wish I could change this for you, but know that I añd others care.  X

  • I am just a month on from having the cystectomy with orthotopic neobladder surgery(connected to my urethra so as close to natural as poss). It is worth it. I am very glad I haven't got a stoma/urostomy though sure you adapt to that too if need be. I won't lie - it is tough to go through. My top tip would be if you struggle with eating in the 1st couple weeks afterwards, go for as bland food as possible. I mean really bland. My sister bought me some tilda rice & veg baby food - microwavable - hopefully they can heat for you when you're on the ward. That's the gentlest thing to start off with. Also plain yoghurt felt very soothing. And veg soups especially, golden veg & mushroom, (not tomato at first) went down pretty well. White toast felt easier than brown. Cereal was ok, not porridge. Hope I'm not freaking you out, but this is the most practical advice I can give that I wish someone had told me. All the best. I'm sure your surgeons are amazing and you will do very well.

  • And just to re-iterate, even though it is a challenge, it is worth it. Sending you lots of positive energy :)

  • Thanks for that. Im feeling positive on having a neo bladder, and do realize that it is going to be a long haul on recovery. So what was the problem with food. Was it your appetite or digesting your food?

  • Both at first, but that's why I wanted to give you those tips, because if I'd had the right things to eat it would have been much easier. all the best, Jo

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