Nancy,
I hope your cysto on Monday is clear. BCG is the "gold standard" and a lot of docs want to jump to cystectomy when BCG doesn't work. But of course there are other treatments such as Mitomycin that are available.

David

david,

I am sorry the BCG wasn't the medicine for you. I am hoping it works forme - so far I had 6 wks clear cysto - next on on Monday - if all clear 3 wks of BCG - I guess I have to keep hoping it will help. My Dr did say if I had any return I would have to consider having a cystectomy. One of my 2nd (3rd?) Opinions from the Cancer hospital near me, said there are other treatments - however, I have heard BCG is the best shot. It sounds like you ave a good plan with MD Anderson. We are our best advocate for our health - Education and Follow-Thru!
Good Luck!
Nancy S

No I didn't. The inflammation from my 6 treatments was so severe that the doc did not feel additional treatments could be tolerated. I had "bullous edema" in the bladder (red puffy bleeding blisters).

David,
I read that you had 6 wks of BCG - did you have BCG maintenance also?

Nancy S

Warren,... do you think cystectomy is warranted in my situation (recurrences of TA papillar and CIS, failed BCG, but all non-invasive so far)?

Dear David,
I don't feel qualified to give you that opinion. I think your doctor is concerned that if you have many recurrences, you may become one of those who has a worse outcome by delaying cystectomy. But that's why you need a qualified second opinion - so that you're not pushed into something, and yet do what's best to keep you among us for a long time.
BTW, how about an 8 week course of Mitomycin C if the BCG hasn't worked? I's not better than BCG, but it's different, and it appears to have worked for me.

Warren,

I respect your opinion: do you think cystectomy is warranted in my situation (recurrences of TA papillar and CIS, failed BCG, but all non-invasive so far)?

I am going to get a referral to M.D. Anderson if possible for a second opinion. I was a patient there about 11 years ago when I had a squamous cell carcinoma removed from under my tongue (no recurrences).

Thanks,
David