Anyone have recurrence after the initial 6 BCG induction treatments?

Posted by kirsten210 @kirsten210, 1 day ago

I was diagnosed in Feb 2025 with High Grade Papillary Urothelial Carcinoma, stage Ta. It was a large tumor that was found. It took 3 turbts to entirely remove the original tumor. That was done by May 22nd. I then did 6 weeks of BCG treatments after healing from surgery. My first cystoscopy was last week and the cancer is back already. Not just 1 tumor either, multiple. Its been rather discouraging. I have another turbt surgery scheduled for Oct 22nd and the plan is to try BCG again. Has anyone else experienced this? Was it successful? If not, what happens next? Im trying to preserve my bladder as long as possible.

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jaxfl | @jaxfl | 20 hours ago

RC ASAP or TMT is probably better than chancing BCG again. Or DOCE-GEM. The latest and greatest is time release GEM.

kirsten210 | @kirsten210 | 20 hours ago

In reply to @jaxfl "RC ASAP or TMT is probably better than chancing BCG again. Or DOCE-GEM. The latest and..." + (show)

Removing the bladder is not an option Im going to consider. Im only 43. I want to try all bladder preservation options first.

jaxfl | @jaxfl | 17 hours ago

I am 46. I chose RC. My papillary and CIS was PT1A TURBT1, PT0A TURBT2 and upstaged to PT3A at RC so be careful what you wish for. Granted: I had a diverticulum. But there are many on BCAN/Inspire with PT0A/PT1A with LVI+ or LVI- who progress without warning.

kirsten210 | @kirsten210 | 16 hours ago

In reply to @jaxfl "I am 46. I chose RC. My papillary and CIS was PT1A TURBT1, PT0A TURBT2 and..." + (show)

Thank you for the insight. I am aware of the potential consequences of going the bladder preservation route and I accept them fully. I'm simply looking for more feedback from people who chose the bladder preservation path and what they tried after BCG and their experiences with that.

pgriesbach | @pgriesbach | 12 hours ago

I have had NMIBC since 2012.....still fighting it. nothing has worked.....the inside of my bladder looks like a war zone....I have been to the OR 15 plus times...TURBIT etc......I will be trying ADSTILADRIN....my urologist has my best interest at heart...and the best philosophy...keep your bladder as long as you can.....but when its time.....its gotta go.....there are many other drugs coming on the horizon too....so keep the faith and keep trying the drugs as they come on.....best of luck...and .keep up with your monitoring ........

jowilliams1 | @jowilliams1 | 4 hours ago

In reply to @kirsten210 "Thank you for the insight. I am aware of the potential consequences of going the bladder..." + (show)

I hope that works for you. I was diagnosed at 54 and didn't have a choice but RC since my cancer was muscle invasive. However, I had a neobladder "installed" and it works exceptionally well. You may want to research that should you ever have to go the RC route.

allen1947 | @allenshirl | 1 hour ago

After 1st surgery (11/24), then had 6 BCG treatments. It was not successful. Tumor returned. Then had "blue-light" assisted surgery (5/25). Cystoscopy showed aggressive tumor return. Had third surgery. After passing blood clots for a while, I had an Adstiladrin treatment. I am going in for Cystoscopy October 9. Praying for good results. I am hopeful because I have seen no blood in urine. Every time I urinate without blood, I am grateful. I want to keep my bladder as you do. Hope all goes well with you.
Allen