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Hi all

im just about to turn 59 in November and was diagnosed almost a year ago with NMIBC, had my first TURBT Mar 2024.  Because I was on a biological injection for psoriasis I was to wait 3 months to start my BCG treatments.  Did my first 6  with no side effects at all for the first 4, last 2 had very minimal side effects.  Waited another 6 weeks before starting my next round of BCG and another tumour was found.  Again non muscular.  Did my first treatment of the second round (#7) side effects were a bit worse for sure.. fever, urinating every 15 min for a few days.  I imagine the side effects will be a bit worse with my next treatment.  Not looking forward to that.  Next TURBT is scheduled for Dec 1, and if it is the same type of aggressive cancer as the first I may have to start at 6 weeks of treatments again.. 

on July 1 they put a scope in and looked before I started my BCG treatments, no cancer was seen.  I did the 6 treatments then 6 weeks in between and a scope again before my next treatments and cancer was found again... does this mean the treatments aren’t working for me?  Are there other treatments, or is BCG the one? It is definitely a bit concerning to have it come back so soon.   It has been a challenging year for sure.  

  • Hi  and a warm welcome to the group. Unfortunately we know that this thing has a habit of recurring, even after treatment. Because BCG did not appear to work your next TURBT will give more answers and a way forward. In some cases they revert to Mitomycin which is a chemo treatment rather than immunotherapy. When one doesn't work. the other may. It does sound as though they are keeping a close eye on you so hopefully they will come up with a successful outcome. Best wishes.

    Best wishes to All,   rily.

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  • Sorry to hear that you've had ups and downs during the year's treatment and examination sessions. Many on this supportive forum have had similar diagnoses and treatments but you will quickly see that each patient can respond differently.  Your medical team will monitor your case carefully and, if necessary, available and suitable for you, may offer an alternative course of action. Your concerns are completely natural. Bladder cancer is one of the more treatable cancers and this forum can offer wonderful support during the times of uncertainty. There is usually a lot of waiting between phases of care when the what ifs can become overpowering. Dip in here whenever you feel the need and we will try to help.

  • Hi Canadian,Welcome to the group.I hope you will find it helpful and supportive.Best wishes Jane 

  • Hi Canadian and I'll add my welcome. My husband had Mitomycin following a recurrence after 6 BCG, and has not had any more in around 5 years. Hope that backs up rily's suggestion. 

    Denby