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?

15 Replies

  • 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.

  • Hi Robyndasey,

    I would like to share to you one of my clients who is a cancer patients survivor and who use to be a bedridden because of his diseases.



    The Garcia couple works at the San Bernardino Hospital: Vicente as a Finance Officer and Emily as a Purchasing Officer. So, when Vicente was diagnosed with Laryngeal Cancer, it was a grave concern not only for his family but also for the majority of the hospital officials. They didn’t waste any time, chemotherapy was performed right away. And Emily, having to struggle with the expensive treatment and much emotional stress, realized that the story she sees day after day in her workplace had now become her own reality. “Now, I know how they feel,” she admitted thinking.

    Emily and their children saw the pain Vicente had to endure as he underwent radiation. Yet they remained positive because of their unwavering faith and constant prayer for mercy. But two months later, when the CT scan and biopsy results were brought to them by the Oncologist, Emily recalls, “The way he walked towards us warned us of the coming blow. The doctor said that for Vicente to live, his throat has to be removed and after he gets some rest, he needs to go through another cycle of chemo.”

    “That moment still haunts me to this very day”, Emily continued. “My heart sank as I gently caressed my husband’s cold hands, our eyes met, and I knew we were thinking the same thing: the end was near. The doctor and I both knew he wouldn’t be able to survive eight, or even just one more session of chemo. We prayed together, and with much conviction, placed my husband’s life before God.”

    The treatment that followed took a huge financial toll on them but she wasn’t going to give up on Vicente. She began to research and looked for alternative solutions until a few of her friends shared some articles through Facebook about AIM Global. “I learned that they have a product that gives hope to the hopeless. Through a cousin of mine, a schedule was set and I met with Dr. Lori Dela Cruz.”

    “The four months of chemotherapy didn’t seem to help him improve. He was bed-ridden and his condition looked really bad. That’s when we decided to have him take C24/7, three capsules daily. After three months of intake, we noticed that the supplements have clearly improved his health. So much so that when he went through another Laryngoscope, by God’s miracle, he was cleared of the cancer!

    The doctors who witnessed this incredible recovery were so amazed! The Oncologist himself recommend the product of naturesway which is the c24/7 and choleduz.

  • 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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