NMIBC BCG UNRESPONSIVE

Hi wrinkles and welcome to the group although sorry to hear your husband's BCG failed. Unfortunately it is not uncommon but we have seen it successful second time around. In some cases people change to Mitomycin. This is a chemo therapy rather than immune treatment, administered the same way. I hope it goes well tomorrow. Best wishes.

Unfortunately hubby was only offered BCG or removal which is why we're searching for alternative therapies. Mitomycin is interesting - in fact we are looking for any treatment for aggressive CIS with a chance of preserving bladder. 

Thanks Rily

If your hospital is not keen, you could ask for a second opinion. I appreciate that you are keen for bladder preservation, presumably you have specific reasons for that. But do bear in mind that CIS is risky, recurrences can jump to be muscle invasive and even to be incurable. I do think it is important that you are making an informed decision. Best wishes.

Good luck with the half dose.

My cancer was muscle-invasive by the time it was found so I was only only offered bladder removal. Having had it, robotically, I would say it was not as bad as I feared and I have never missed my bladder. (Now 2 plus years post op and fit and well). 

All the best

Latestart

Thanks for your thoughts experience and knowledge. We're trying to find any options with good outcomes apart from bladder removal but not sure there are any. 

Good luck and good health to you all x

Hi Wrinkles,Welcome to the group.I had no choice but bladder removal but I don’t miss my bladder at all and am cancer free over 5 and half years post surgery.Best wishes for your husbands treatment.Jane x

Thanks Jane. I realised removal was possibility from start of treatment but Phil didn't & its a shock (as it was for all of you I'm sure). We have absolutely no knowledge of life without bladder & you always fear unknown most. Maybe we should learn rather than kick against it. 

Thanks glad your cancer free take care  Jill 

I can recall feeling sick when my consultant first mentioned the possibility of needing bladder removal. But having weighed up the pros & cons &my personal circumstances, it is what I chose. I realise that the side effects are different for men, but worth exploring all the options, risks and benefits etc before making a decision. Best wishes.

It was slightly different for me as I had always known my bladder would have to be removed at some stage.It was first mentioned back in 1997 but it didn’t get done and I do regret that I had to develop cancer before cystectomy.Had I had the surgery earlier I would have been spared that plus years of pain from Interstitial cystitis.It was the damage from I.C that led to the development of Squamous cell cancer.It was very advanced by the time of the surgery.It was still a shock to find out the bladder would have to be removed but the surgery was not as bad as I expected.The recovery was tough but to be out of pain has been so liberating.Jane x

I insisted on bladder removal after BCG no regrets now cancer free.