Bcg treatment

Bcg

Hi . I though I recognised the name. It is few years since you have been here. I've no personal experience of BCG, but I  know we have had people here who have continued with it for over ten years. I am sure someone will be along to share. I hope all goes well with your consultation. Keep us posted. Best wishes.

Wow,really,wasn't aware that you could have it for so long,thanks for that ,I'll keep you posted,Thank you for replying

Hi Your lisakay67.  Personally, if the consultant says anything other than 'lets carry on with the BCG.' I would politely but firmly request that he/she let you try a course of Mitomycin.

Everybody's body is different, but if you're newly back on here you may not have read my husband's experience. He had 'a forest' of growths for a second time approx ten years apart. Six BCG and six weeks wait later this year, he woke up from the anaesthetic to the news he had already sprouted another papilloma which they had removed [so cystoscopy turned into TURBT on the spot]. Offered more BCG, Mitomycin or bladder removal as "equal options" [forgive the repetition those who've already read, however I've also recently had an andrology nurse tell me this should never have been said to us]. Chose Mitomycin. This was supposed to be delivered heated as this makes it more effective. After a couple of fiasco goes [bladder just squirted the stuff out in minutes] they carried on with it cold. Even this got harder and harder to retain for the intended time. But it has STILL cleared the cancer at biopsy afterwards despite all the issues getting/keeping it in. So we reckon it's good stuff. Freedom for 3 months then a flexi and mitomycin washout to nobble any naughty cells too small to be seen.

Be warned I had a scout round one or two other sites [ABC and NHS] last week and they are still hardly mentioning Mitomycin, whilst mostly treating radical cystectomy like a moderate op. For those who really have no other option left or simply prefer it, fine, but do not be misled.

Last 'personally I would' for tonight, do you have a trusted ally you can take along to the consultation with you? It's really good if they take notes in a big notebook for you of what is said. They do not have to say anything, but you will feel very much stronger, should you need to be, for having them there and you can refer to their notes afterwards.

Thinking of you for Tuesday,

Denby

I think you said your original diagnosis was TaG2? If recurrences are only low grade, I think they're unlikely to suggest bladder removal. However, they might well feel BCG is not being effective. As Denby says, mitomycin might be an option & I believe there are other intravesical chemo options that some people will offer.

Take heart, my brother had many low grade recurrences (never had BCG but was threatened when he had a G2 tumour) but eventually they stopped & he was later discharged. But if it does come ever to it, bladder removal is not as bad as you might fear, many of us have been through it & doing just fine.