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Bladder cancer AFTER BCG

Bladder Cancer | Last Active: May 4 7:56am | Replies (17)

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Profile picture for Sue, Volunteer Mentor @sepdvm

Hello @kevinpm. Your history sounds like my husband's only his started with a highly aggressive muscle invasive cancer. He was a BCG failure and was receiving care at Mayo Rochester. He had also had chemo initially following first surgery. His next trial was Keytruda, which had some side effects and still more new spots showed up in bladder over 4 months. By this time he had been back and forth with many cystoscopies and TURBTS and wanted to go for a cure. He had a radical cystectomy and prostatectomy 3 years ago and despite many postoperative complications and needing to self cath 3-4 times daily , he is cancer free and happy with the outcome. There are a couple of newer treatment regimens available now which were not then which he certainly would have tried prior to surgery. I know others have gone for years with less aggressive cancers and regular monitoring and TURBTS. They are working at saving the bladder more each year with newly approved treatments. Are you more satisfied with your medical team at Mayo?

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Replies to "Hello @kevinpm. Your history sounds like my husband's only his started with a highly aggressive muscle..."

@sepdvm Thank you for responding. Information you wrote is helpful. Glad your husband is alive and seemingly well. I am happy with Mayo, certainly when I compare it to what I had down here in Illinois. I guess I'm disappointed that there are different people with every step I take and that it seems as though no one says anything when the cancer returned. The PA doing my last cystoscopy only said we need to alert your Urology team. I'm on my way back to Illinois and I get a call that they are scheduling me for a resection four weeks later. No one will say anything after that procedure I'm sure and then I have to wait 4 weeks to do a zoom with (hopefully) the head of urology. I guess I would like someone to tell me that they have seen this before and what steps they have planned moving forward. Did your husband have a choice of a stoma or neobladder with the radical cystectomy/prostatectectomy?