Recurrence after BCG

Hi Pompey365 and welcome to the group although sorry to hear you have a recurrence. In some cases where BCG has failed then the alternative Mitomycin has been successful. Some people prefer to have continued TURBTs in order to preserve their bladder while others choose removal to try and put an end to recurrences. It is a personal decision, but I am sure others will be along to share personal experiences. Best wishes.

Thanks Rily

hi pompey365, sorry to hear you have a reoccurrence. Nobody can be sure which treatment is best, but obviously the medics are the most informed. I was diagnosed G2 T1 in 2017 and over the next 3 and a half years I had BCG. First the 6 induction doses and then groups of 3 top up doses every few months. My cancer returned four times during  the treatment but I kept on going with BCG till I'd had the full Lamm Protocol (27 doses) which I'd read was the gold star recommendation. When the treatment ended my heart was in my mouth for fear of another return but so far almost three years later I'm all clear. I don't count my chickens because I know this disease can be back anytime, but so far I'm enjoying my cancer free life and I kept my bladder (albeit rather sore and scarred from it's BCG battering). Ps I do count the chickens which live in my garden and produce beautiful eggs. Good luck with your decision. Hx 

Thanks for the reply, were you under any pressure from the consultants to have a cystectomy at any point when you had the 4 recurrences?

The consultants never put any pressure on me from first diagnosis onwards. I remember after yet another TURBT asking one doc if he thought the BCG was failing and he said while the grade and stage was lower than my first tumour it was worth carrying on. After 18 doses the multidisciplinary team suggested I might want to stop because of bladder damage that can be caused by BCG, but I said I wanted the full protocol. So far so good Hx

Thanks, that is really helpful. I think the issue is that mine was G3 pTa to begin with and whilst the most recent grading is lower it has progressed to T1. Still not sure what to do for the best as two MDT meetings have said cystectomy is the best option but did at least in one meeting think that restarting BCG was an option.

Is it possible to restart BCG immediately and have a cystoscopy in 3 months? Would they start with another 6 week induction dose? Would a 3 month delay in having the surgery pose much risk? I'd want answers to these questions. I've got a brilliant Cancer Nurse Specialist who I can phone for this kind of conversation....have you got someone like this? I should add I was 70 when diagnosed, live alone in a rural situation, previously had big surgery (hysterectomy) and didn't want to have more major surgery. Lots of folk on this site have had successful cystectomies and recovered really well. Hope you can discuss everything with someone helpful. Hx

Thanks very much again. I am seeing my consultant next week so will be asking these questions of him as I don't have a CNS as I have had everything done under private healthcare insurance wiith the exception of the first initial diagnosis and TURBT.

Hi Pompey365 and welcome. My OH started exactly the same as you, though a great many tumours. A TURBT, 6 BCG, and the 'check' cystoscopy , under GA because of his strictures, had turned into a second TURBT due to a recurrence. He was offered '3 equal options' of more BCG, bladder removal, or Mitomycin. Extremely keen to keep his bladder and everything that goes with it, and feeling the BCG must have 'failed', he went for the Mitomycin. He couldn't keep it in heated at all, so the consultant said use it as it comes, he still couldn't hold it for as long as they said, and the hold time got shorter and shorter as the course went on. But he still hasn't had any recurrences in five years. I hope that is encouraging.

I will say back then I had not joined this group, so I did not understand how it can go with BCG -like a path full of weeds, you treat it with chemicals and get rid of that lot of weeds. Then some new weeds grow, so you just need to treat it again.

Any more questions about the Mitomycin feel free to ask,

Denby

Thanks Denby, that is very helpful. Hopefully will make some progress with the consultant next week but feeling very negative with two MDTs now suggesting that cystectomy is the best option and somewhat confused as to what to do for the best.