BCG Protocol not adhered to!

Hi Potter100. Good to hear from you, but sorry to hear you have had a recurrence. Not sure about breaking protocol as it tends to differ depending on who you talk to. Good to know that things are better than the last time. I hope your next lot of BCG sees it off. Best wishes.

Thanks Rily. Not sure whether I’ll get another round of BCG. I meant to say the Oncologist will be asked for his opinion on either to restart BCG or do a cystectomy. I’m very grateful that the NHS have managed this problem for the last 12 years for me! Thanks for your kind wish.

Hi, i had a TURBT about six weeks after 6 BCGs to make sure it was working, not really heard of having 9 then the TURBT, Good luck X

Hi Sue. I have read the literature again and it does say after 6 weeks. However, the nurse on the day of the cystocopy said I shouldn’t have come until after the next 3 maintainance treatments and in my meeting with the specialist today she repeated this and now seeks the advice of an oncologist. I’ll feed back what comes of this.  

Hi Potter100, my husband was told it would be 6 BCG then cystoscopy after 4 to 6 weeks to check, then if results good 3 months 'off' with 3 maintenance BCG before the next check. However please do not think that BCG and cystectomy are the only options. My husband's 6 BCG left him still growing a new papilloma by 6 weeks later. Fortunately for him as he has strictures in the urethra they had booked him for  rigid under gen. anaesthetic so it was Turbt'd all at the one go.

But then they said to us he had "3 equal options " ie more BCG, intravesical chemo [Mitomycin] or immediate cystectomy. The prospect of bladder removal was utterly horrifying to us after what we had heard in a BBC Radio 4 programme ages ago [and later confirmed with MacMillan info]. A urology nurse has since told me it should never have been presented like that by the doctor.

So, having not found this forum then, and so having no idea that lots of people have recurrences and more BCG for years, up to dozens of BCGs, we just said 'Chemo please'. The procedure is pretty similar to the BCG you are used to depending a bit if they use the hot or cold approach. My husband had increasing difficutly with it as the course went on but it still worked well enough to give him a 3 months all clear. We can live very well with 3 monthly checkups and he still has his bladder and everything else thank you very much. So we and the NHS have been saved a packet and permanent lifestyle alteration at the moment. Some people do prefer removal but as you have already been grateful for 12 years management of it, it must be worth asking about whether there is any clinical reason why you should not be tried with the Mitomycin.

All the very best, I do hope our tale is encouraging for you.

Denby

My husband has to wait 8 weeks for his rigid cystoscopy and biopsy after his initial 6BC G treatments. The reason given was that at 6weeks it is less obvious whether any redness is due to inflammation or recurrence.

Potter100, I think I was told if the recurrence stage and grade wasn’t higher than what you was first diagnosed with then you can start again with BCG. Someone correct me if I’m wrong please, X