← Return to BCG treatment done, but cystoscopy found new tumor: What next?

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Profile picture for Sue, Volunteer Mentor @sepdvm

Hello @stanghbogdan1. It is not unusual for recurrence, or for BCG failure. My husband experienced this same situation after surgery and chemotherapy. Bladder tumors like to keep coming back as the cancer cells are floating around in there just waiting to attach to the bladder wall. It has to be terribly scary at your age with a young family. Cancer really does take hold and change your life but you can still be a survivor. My husband had multiple TURBTS (the surgeries via cystoscope as they are called) to remove suspicious or cancerous area of his bladder. His urologist suggested Keytruda but he had recurrences on that. Adstiladren was not approved quite yet so he did not get to try that. He chose to have his bladder removed- a radical cystectomy, and a neobladder to replace it. This was about 2 1/2 years after his initial diagnosis. He just didn't like having cystoscopies over and over and removing tumors as they showed up. His tumor was highly aggressive from the start. He is free of cancer now and having recheck cystoscopies and CT scans yearly. Other people I have known have lived long lives with a less aggressive tumor having recurrences removed as they happen. Every year new therapies emerge from testing or are in clinical trials so you just keep kicking the can down the road doing what you have to until one of the treatments does the trick. Adstiladren seems to be helping many people. We are only patients sharing our experiences and knowledge acquired through this cancer trip. Your medical team is the one for answers as they have all your information. It is always wise to consider a second opinion especially at a large cancer center or teaching hospital where newer modes of treatment are happening. Do you have such a facility nearby? We travel 10 hours by car to Mayo Clinic Rochester MN from Ohio for our cancer care. It has been worth it.

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Replies to "Hello @stanghbogdan1. It is not unusual for recurrence, or for BCG failure. My husband experienced this..."

@sepdvm
My husband is in similar situation. Three years ago we started at Mayo in Rochester because we weren’t getting a diagnosis here. In hindsight, the blood in his urine was the moment to run to a good institution lije Mayo. We found a facility near us to administer BCG. After two rounds it failed. That facility could not do the gem/doc that Mayo advised, so we found that a Urologist at KU med center would, so we switched. The gem/ doc seems to have worked for high grade tumors, but at three years( 5 TURBTs), with a removal of low grade tumors, Dr is not continuing treatment- monitoring only. He’s having a cysto 12/23 and hopefully he’s clear. My husband is tired of treatment so the monitoring only has been wonderful. Hopefully Thats will continue. TURBTs are pretty disruptive and require healing time and difficulty with bladder control, right?
It seems like both at MAYO and KU, the first thing they recommend is totally removal, but they listen and understand it’s not what we want. Not yet.