Hi everyone & wishing you all the best as none of us are here for fun.
My husband 1st 6 BCG treatments weren't successful, he spent 12 days in hospital after 1st BCG second try. Just seen consultant it's an aggressive CIS & we were offered full dose BCG, 1/2 dose or bladder removal. Consultant would choose 1/2 dose so hubby starts tomorrow.
We're trying to find any alternative treatments /trials to preserve bladder.
Good luck to you all
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.
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 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
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