Mom
Bladder removal is often the recommended course of action in recurrent high grade BCG refractory (resistant) disease, particularly if that disease is accompanied by carcinoma in situ (CIS). I'm not sure of the numbers on it. BCG has a very high sucess rate (exceptionally good with CIS) and can often stave off further intervention for a number of years - sometimes indefinitely. My own cystectomy was elective. My consultant was ready for another round of BCG. But after reading about peoples experiences with neobladders and meeting with recipients here in my home town and reading up on CIS, I felt it was the course I felt most comfortable with. It was by no means an easy decision to make. And I could have held it off for another period.
If you are interested, there is a facility on this forum for creating a poll. You could poll to see how many people had a cystectomy within X years of BCG treatment. Look for Start New Poll where you'd normally start a new topic and it's follow your nose from there.
Emotional impact; I'm in UK so I think the treatments for depression may be a bit different. Here, I personally went for counselling and took Temazepam for sleeping at one point. Plus the other steps outlined above. The hospital has introduced me to a group of cystectomees who regularly meet to discuss issues surrounding their situation (I haven't had a chance to go there yet - too much surfing the BCWC
. I think my medics were pretty aware and receptive to the emotional/mental impact but fielded such issues to the GPs here.
My consultant two years ago referred constantly to "devastation" when describing the aftermath of cystectomy. I thought it was pretty unhelpful and, though the op is certainly tough and challenging and there can be complications, I think he over-spiced things somewhat and projected onto my situation some of his own personal fears.
Sorry can't be more helpful with the numbers.
Best Wishes
Tim