Hi Mike,
Thank you for your reply. We too have been told that the protocol is bladder removal if the 2nd round of BCG + Interferon does not result in a negative biopsy report. The strange thing for my husband is that his local urologist believed in continued treatments with BCG and did two more rounds. In brief, his history goes like this: Feb 2013 – CIS discovered, 6 BCGs given; June 2013 no invasive carcinoma seen, 6 BCG + Interferon given; Nov 2013 small malignant tumor in situ removed followed by 6 BCGs; Feb 2014 all biopsies negative, 3 BCGs given; April 2014 all biopsies negative; July 2014 all biopsies negative. I guess we are waiting to see cancer return before being comfortable with bladder removal and the lifestyle change it will cause. Others, I realize, would opt for removal immediately if a Cleveland Clinic urology oncologist told them it was imperative to do so for best overall outcome. Statistics say there is a 30-60% chance of recurrence. How would one know if they are in the percentile that it does not recur? Our local urologist told him that bladders have been removed and biopsied and proven to not have cancer. He used to remove bladders himself but now only removes kidneys and prostate. We haven’t asked him directly but we suspect he opted not to follow Cleveland Clinic’s protocol of removing a bladder even if the biopsy reports show all negative, just a speculation on our part. While my husband has not yet made his final decision, you may want to check back with us in the future to see what he decided and how he faired which may help you if you arrive at this point of having to make a decision for Radical Cystectomy or to continue with surveillance until cancer shows again. The risk of course is that it could reappear with a vengeance and also break through the bladder wall becoming invasive vs. his current stage of non-invasive. Such a hard decision. We wish the best of luck to you with the 2nd round of BCG, and please let us know if we can answer any questions you may have as you continue with this battle. Laurie & Phil 8/5/14