BCG cystitis is killing me. Optimum point to discontinue?

Hi  trynab_stoical . Never had BCG myself so not the best to comment, but if it is causing you so much distress it may be worth having a conversation with your docs to see if you would benefit with a break. Best wishes.

My husband had to stop after treatment no. 11 two years ago because of the side effects. He has been clear since so we hope it has done its work. It took several months for his bladder to settle down but he's only up once in the night now which is a huge improvement. I'm really glad he stopped when he did. Hope that helps.

It does help, ty.

By 11, do you mean 11 individual installations? i.e. 6 for the induction followed by 3 for the first maintenance and then he only managed 2 of the second maintenance? (if that makes sense) 

It's a relief to hear its normal for it to take ages to settle down and there isn't something going wrong for me specifically.  

Thanks rilly, You're right, that's what I need to do. Thing is, I'm being treated in France and my French isn't that good. That's no excuse I know, I can write him an email in google translate. It's not quite the same though as face to face. But you're right I should and I will. 

Yes he did the initial 6, followed by 3 and then the final 2. He had several delays between the treatments with red patches but all were benign. He was diagnosed Jan 2018 with T2G3 and CIS.

He had chemo/radiation for the invasive tumour. The CIS returned and the BCG was to deal with that. His last cystoscopy was Jan 2023 which was clear. Not quite sure why we've heard nothing for a year. But he feels fine and as I said the side effects have thankfully disappeared.

As always things can change again but after years of treatment it's been a novelty to have a quiet period of time. 

"As always things can change again but after years of treatment it's been a novelty to have a quiet period of time."

I can imagine. My partner complains that I allow my cancer to 'dominate everything'. I'm looking forward to a quiet period more than she is!

Hello, my husband was on a shorter protocol of 15 but was only able to complete 12 installations due to severe inflammation of the prostate. He did go on to have a grade 3 recurrence about a year after the last treatment. He opted for more BCG and has had I think 12 of the planned 27 but is having quite severe cystitis and a recent CT scan shows thickening - he is to see consultant in a week or so. He did ask if he could stop before but they were quite firm that he should try and complete the course if at all possible. I can't advise you but he has said he won't have any more BCG as he feels he is at the tipping point of having permanent damage. We don't know what the significance of thickening is - will have waited a month for this meeting - not ideal. 

Good afternoon Catfan. My experience of BCG was a programme of 15 instillations between February 2021 and September 2022. I experienced no side effects at all . The BCG was stopped with no further programme for a year . A decision to use mitomycin was arranged for June 2023 with 6 procedures. Again no side effects . A clear cystoscopy in September and I’m waiting for a biopsy following the cystoscopy in  mid December.