BCG side effects

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Hi, I'm new here.  I'm British but living in Portugal now.  I was diagnosed with a 2.5cm high grade non muscle invasive tumour about 18 +months ago.  I had two TURBT surgeries and have had -to date- 18 BCG installations. I had the last one yesterday and next I have another cystoscopy at the beginning of September. The first six-maintenance- BCG treatments were not too bad but they have been getting worse and are so bad that sometimes I think I just want to stop treatment  altogether.  My husband is not happy when I say this. Has anybody else felt like this?

I saw that some people in US have declined BCG and gone for regular cystoscopies and I'd be happy to do that, but my doctor was not keen.  When I asked him if I could do it, he replied "well not if you want to keep your bladder"

I'd appreciate hearing other views on this.  Thanks.

  • Hi  and a warm welcome to this friendly and supportive group. Not had the pleasure of BCG myself but many here have and should be along to share experiences. We know people have varying effect of BCG and hopefully you should start feeling better as time moves on and you may then have different thoughts about continuing. I hope all goes well with your check up. Best wishes.

    Best wishes to All,   rily.

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  • Thank you so much for replying and for your warm welcome. I will look forward to fellow BCG patients  comments.

    Take care

    1. Hi karenhg,,

    Welcome to the forum, but sorry to hear about your diagnosis.

    I was diagnosed in November/ December 2022 so I'm about 18 months in myself. Mine was high grade, 3cm with carpeting.

     However I've only had 12 BCG instillations. my next set of three begins in June at some point.

    I agree that it does seem to get harder as the BCG goes on. However I'm now at 6 monthly intervals, so have had more time to recover in-between the BCG treatment's.

    I still have 3 monthly biopsies. Which don't really bother me. However saying that I do also have the same thoughts, is the BCG doing more harm etc, what are the long term affects, does it make a difference and so on. I feel guilty having these thoughts sometimes as I believe the medical staff want the bes for me, but when you're in pain and running to the toilet every 5 minutes after each instillation it's hard.

    To counter these thoughts I consider myself lucky. My sister in law passed away from cancer just before my diagnosis and I seeing what she went through I wouldn't wish on anyone. This of course played on my mind also.

    I've since heard two stories of people I know having family members getting diagnosed and very sadly passing away a month or so later.

    So whilst I have the same thoughts and feelings as you've been having I'm putting my trust in the medical experts and will hopefully have the full 27 treatments. 

    I'm not saying that everyone should have the same opinion as me of course, everyone has their own decisions to make and there are no wrong options.

    I'm not sure if this helps or not, but I wish you all the best in whatever decision you make.

    Take care.

    Trevor 

  • My husband had 6 BCG which he didn't have much trouble with, mainly a day or two of fatigue. At his check cystoscopy 6 weks later they found another, new, papilloma. As he was under GA anyway they just TURBT'd it off. but then offered him more BCG, radical cystectomy or Mitomycin. 

    He opted, desperate to keep his bladder and active sex life, and feeling, in ignorance then, that the BCG had 'failed,' to try the Mitomycin. It's put in the bladder just as the BCG is. But it is chemotherapy rather than immunotherapy. Because it is applied to the bladder not through your veins, you don't get the nausea, hair loss etc often associated with chemo. But some doctors mysteriously fail to mention this alternative. A key reason why I sit on this forum five years clear for my husband, to let people know about Mitomycin. Hope the Portuguese doctors can discuss this with you,

    best, Denby

  • Hi BFG,

    Thank you so much for your reply.  It's helpful to know that others have the same feelings as me about BCG treatments. I do appreciate that we are lucky in some ways..... others can find themselves in a much worse situation and I really am very sorry about your sister-in-law.

    My head tells me one thing, but when I feel so awful for a minimum of 2 days, sometimes 3, it's hard to feel positive.  I seem to get the works now, unbearable pain when passing urine so frequently, shivers, fever, headaches, dizziness and tiredness, but not being able to sleep. I am getting depressed over it.

    At least I have a bit of a break now until my next cystoscopy, so I will attempt to forget about it (!) for the summer.

    Wishing you all the very best

    K

  • Hi Denby

    Many thanks for your reply. I am delighted to hear that your husband is doing well!

    Can I just ask if your husband had low or intermediate grade tumour and papilloma?  After reading your reply I have been researching Mitomycin (I had not heard of it before) and the research papers seem to say it is for these grades of disease. Interesting.

    Once again, many thanks

    Regards

    K

  • It can be tough for sure, but the alternatives are not great either. If it does the job however, it will all be worth it. 

  • Hi karenhg,

    Sorry to hear about your symptoms/ side affects and the problems they are creating.

    It is hard, I've thought about stopping the BCG instillations and not had the issues you're going through. I even started to look into my life insurance and if refusing treatment would nul my policy. These thoughts happen after each instillation and for the 24 Hours it seems to take me to recover.

    Now I'm at six monthly intervals, I'm going to continue, hopefully the longer break helps.

    Have a lovely summer. 

    Take care.

    Trevor 

  • Hi Trevor, i totally get the 24hrs thing and how it makes you feel. It is /can be uncomfortable, painful and very tiring needing the loo all the time. I have the same for the 24hrs and then luckily i have just been getting fatigue . I am due to restart on tuesday and the thought of it is niggling at me today. It is a bit of an endurance test, and i try to have distractions to get me through it. It is hard ,but so far worth it. You have done incredibly well to get to six monthly. How many do you have left to do ?

    Much love Angela x

  • Hi Angela, 

    Best of luck for Tuesday, hope it all goes well.

    I'm so happy to be at the six monthly intervals, my last BCG was in January and I hate the 24 hours after, so can fully understand why we have these thoughts.

    I still have 15 installations to go, which is 5 more sessions of 3 (all being well).

    I still have 3 monthly biopsies but these will also go to 6 monthly next year. Its difficult to think this will go on until 2026, but I like to think I'm getting there slowly and surely.

    Keeping everything crossed for you on Tuesday. What number will this be for you?

    Trevor