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What are the Pros and Cons to doing BCG maintenance for several years before having a cystectomy?

I have this underlying concern that after several years of doing BCG I will need to remove the bladder anyway. If this is the case, what are the pros to waiting? What are the cons? I will start maintenance BCG treatments in September 2020.

I am fully aware that BCG is used to limit recurrence and/or progression and not used to put the cancer in remission. If you feel comfortable sharing, I would like to hear from other bladder cancer patients on when they opted for a cystectomy and stopped maintenance.

  1. Hi Anita,
    I was diagnosed in May 2020 - had TURBT - pathology showed residual Hi grade papillary urothelial carcinoma grade 3 TCC and CIS (not muscle invasive) I had a 6 week BCG treatment and follow up cystoscopy a week ago - and the results "looked good"
    Now - to your question:
    My urologist does NOT want to put me onto maintenance BCG even though I asked him to. (I had no side effects at all from the initial BCG course) His view is that I should simply have another cystoscopy in 3 months time - then re-assess. He believes that maintenance BCG can potentially cause long term issues, and should only be undertaken if sufficient evidence suggests it is necessary. Must say - I'm still a touch worried, as maintenance BCG seems to be such a common path.

    So my situation doesn't answer your question about "when did you stop maintenance" as my Uro won't even let me start it! - But it may provide another piece of input to your dilemma? Regards,

    Brian

    1. Thank you Brian.
      I'm sorry that you are having to deal with this as well. My personality is such that I would be worried daily if I wasn't doing maintenance or preparing for bladder removal!
      I wonder what the long term issues are? At 58 my doctor considers the cystectomy too aggressive for now as my recent cystoscopy was negative.
      Have you considered a second opinion? I am considering it but haven't taken action yet.

      I wish you well in your journey with this disease.
      Anita

    2. Hi Anita,

      Sorry it has taken me so long to respond! One of my many excuses is that I'm finding it hard to keep up with all the great resources available - there are at least 6 forums that I've come across - and find myself gong down rabbit warrens, spending hours - then forgetting where I've been, or to go back...
      .. anyhow - onto my case - I did go for a second opinion and my new urologist seemed adamant that maintenance BCG is clearly my best option- so I have changed to him and commence 1/2 strength, 3 infusions in January. Good luck with your next steps Regards, and Happy New Year . brian

  2. Hi I was diagnosed with bladder cancer in October 2018 had 4.5cm tumour removed in dec 2018 second turbt in feb 2019 started bcg in March 6 infusions had a cysto in June 2019 still residual cancer had another round of bcg 3 this time cysto in October 2019 my bladder came clear had another round of bcg 3 another cysto in feb 2020 had a recurrence March 2020 I had 6 rounds of Gemcitabine another cysto in July more recurrence dr offered me more treatment or RC I decided to go with RC as I felt the treatment wasn’t going to work and I would be here in 6 months making the same decision and luckily it is still superficial high grade

    1. Thank you for responding. I am so sorry this has been so hard but really appreciate the feedback.
      I am encouraged that you tried for two years before opting for bladder removal.
      My first maintenance treatment was to start today but due to symptoms I have to wait a week.

    2. going really well just had a ct scan now cancer free

  3. Hi Sarah My RC is on the 13th of October as I have had to do a series of Cardio tests As I suffer from Artiral fibulalation meet with the surgeon on the 28th September. I Was scared the cancer was going to spread as treatment wasn’t working. Having RC I know there it will be challenging but I will be cancer free

    1. Thank you for sharing your story. It is so helpful to hear how others have fought this disease.
      How long have you been doing BCG treatments?

      I am fully aware the BCG can only attempt to keep the recurrence to a minimum and at 58 I want to make the best informed decision to know when the time has come to schedule my RC.

  4. Best of luck Anita hope all went well

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