More BCG?

Hi Didy

Sorry  to hear of your recurrence it is a problem we all might experience. Systemic chemo as I undetstand it does not work for nmibc as the bladder is a barrier both ways. Although I have not had a recurrence I have thought about it many times and from what I have researched bladder removal if you are fit for it results in a good quality of life after recovery enabling most people to live a normal life. My attitude is that if bcg fails once it will probably fail again and the future looks like continual worry and stress. I think cystectomy would be my choice but we all have to make our own choices. Best of luck to you and yours in your journey.

This is a dilemma for many people and your decision may be influenced by all sorts of factors, including prioritising chance of cure vs determination to keep your bladder. The risk of BC becoming invasive (and possibly incurable) increases with recurrences. There are people who have had recurrences and further immunotherapy successfully, and those who chose not to take any more risk but opted for surgery. I also know of those who became incurable after BCG & recurrence. The problem is that as yet, they are unable to say for sure who will do well and who won't.

I was taG3 & actually chose surgery over BCG in the first place. Many of us have had surgery and doing well, happy to answer any questions about that option.

Hi there . I had exactly the same as yourself and this is was in 2020 . I started the BCG treatment in 2020 having the first 6 doses then another 3 then another 3 and unfortunately I had a recurrence in 2021. So after seeing the Consultant he give me the option of bladder removal or continue the BCG treatment . I chose to have another challenge with the BCG .  Again I had to start with 6 doses then another 3 and this is when the pain and discomfort started . I experienced horrendous pain that lasted for 2 to 3 hours after each treatment . I had also started to get serious cystitis and found it difficult to pee as I also had an enlarged prostate . I managed another 3 treatments with BCG then had to stop completely as the cystitis was horrendous also experiencing terrible painful spasms . Also having to use catheters while waiting to have some of my prostate removed to enable me to pee . Things began to improve in 2023 and now nearly 5 years clear . I would seriously think about complete bladder removal . Good luck with whatever you decide .   

I had no choice as mine was muscl-invasive and I think grade 2 (becoming grade 3 at time of bladder removal -  after chemo). After which time it was academic since it had been removed. I felt that I should cope better with that and that the bladder wasn't something I needed to preserve.

And indeed I am glad I no longer have a bladder: stoma and bag is a great deal better for eg sleeping through the night and getting rid of the cancer, (at least at date of op.) As a woman, of course  there was no sexual connotation, which I understand puts off some men.

Good luck with your decision.

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