Have you had chemo or radiotherapy for persistent non muscle invasive bladder cancer?

I was diagnosed with bladder cancer in May 2014, had 3 TURBTs, BCG & EMDA for 9 weeks, a total of 6 cystoscopies and biopsies under General anaesthetic.  The cancer has reduced and remains either Gd2TpA  and /or tissue CIS but I must soon decide whether to have radical Cystonomy - removal of bladder, Uterus, etc .  

I am warned by some hands on clinicians that infection is the biggest problem with any such major surgery and to at least have thorough discussion first with an oncologist about chemo or radiotherapy.  Guys hospital in London where I am being treated said they would refer me to oncology if I wanted.\

Has anyone in the group pursued this avenue?  If so, what was the advice, did you have either therapy, and what was the outcome?

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14 Replies

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  • Sorry I can't answer your questions..my only option was RC...sounds like you in good hands...any questions I will try to help you out

  • Following a diagnosis of stage 2 grade 3 bladder cancer (muscle invasive) I had a radical cystectomy last September following chemotherapy, it is a long slow slog back to health but I am now feeling fit and have just had my first post surgery scan which was clear.  It s a big operation and does take some coming to terms with especially having a stoma, but looking back it was the best option for me and I am definitely fitter now than I was before surgery I swim twice a week and do circuit training good luck with your decision. 

  • Glad to hear you are swimming and doing circuit training after such a large op. I swim almost daily and go to gym a few times a week and would hate to loose those.

  • Hi,,

    I first had symptoms of bladder cancer in July 2014. I had 3 cystoscopies, had a biopsy, then diagnosed with bladder cancer in Dec 2015. I had a TURBT, but it was discovered it has gone to muscle invasive bladder cancer.

    It was then decided by my MDT team, i should have 3 months of Chemotherapy followed by a Radical Cystectomy. After deliberation, i thought thats got to be the best way to go, as the cancer will be permanently removed.

    I started Chemo beginning of Feb 16. I had 4 sessions. But down to underlying problems, i had a heart attack. That was down to my right artery closing up, over months or years. So that was not down to the chemo, and could of happened any time.

    Having a CT Scan, the chemo had caused the cancer to reduce, and it had not spread.

    So i am now waiting for the 17th May, to have a Radical Cystectomy and at the same time they will reconstruct a Neo Bladder, so i wont be having a stoma. The operation will last about 9 hours.

    Having thought about this, and getting my mind around to it, a Radical Cystectomy, for me, in my opinion has to be the best way. It may be around 3 to 6 months recovery. We can fight infections, but the cancer will be removed.

    If i can be of any help, please let me know.

    Regards    Gareth

  • I had the same as you mate. . December 2024. I'm now fully recovered but  still have trouble weeing. I'm clear so I'm lucky. Good  luck and a speedy recovery .

  • Thanks for that. Good news that your clear,,,, Did you have a Neo Bladder reconstruction?

  • Thanks and fingers crossed for your op.  I especially fear infection as Igor sepsis at home The day after release from hospital after a TURBT.  Sepsis -poison I the bloodstream-can kill in 24 hours.  I was too ill to go to A&E but insisted on getting GP out of hours service( it was Saturday), who put me on double dose of antibiotics for 2days . I recovered then.  Consultant bluntly said later it should not have happened with this minor procedure but same has undoubtedly caused it.

  • I had treatments for 3 years (my decision) & ended up having to have removal of bladder, cervix + a complete hysterectomy...It's life changing, but, it's life!!  Good Luck!!

  • Did you have chemo &/or radiation therapy? I have had a combo of BSG & EMDA, with cancer greatly reduced still non muscle invasive but T2 hi grade.  And how has your recovery and life been after your major surgery?

  • I had 1 1/2 BCG treatments - no chemo or radiation....1/2 way through the first BCG treatment, cancer was found again...I was asked what I wanted to do & chose to start that treatment again...

    I'm ok - slow recoup & lots of head games but I think I'm on the winning side now...(also, spring is here!!)

  • My bladder cancer returned every month  for a while then they decided with the BCG, Once a week for 6 weeks then every three months 1 treatment for a while. Cancer was gone for  7 years  and came back again. I am finally clear again and have got to not having scope for 2 years, pretty scary when you are use to every 3  months to 6 months to 9 months then a year, a lot can happen in 2 years. Will get checked this Nov. hope things are good.

  • I had chemo and then radio last year at The Christie in Manchester. The short story is that the tumour has now gone and I have had three check cystoscopies all clear so far. The bad news is that the chemo is grossly unpleasant and the radio took me quite a while to get back to normal following it! However, it has worked so far and I still have my bladder.

    My oncologist and her team were excellent, supportive and gave me good advice and options. I wish you all the best in what you decide to do.

  • Exhaust all possibilities before bladder removal.

  • exhaust all possibilities before bladder removal.

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