Anyone have recurrence after the initial 6 BCG induction treatments?

Posted by kirsten210 @kirsten210, Sep 17 6:20pm

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 | Sep 18 3:30pm

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

kirsten210 | @kirsten210 | Sep 18 4:06pm

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 | Sep 18 6:45pm

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 | Sep 18 7:21pm

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 | Sep 19 12:00am

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 | Sep 19 7:35am

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 | Sep 19 10:23am

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

krgordon | @krgordon | Sep 20 10:19am

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

I was diagnosed in 2023. I had a large urothelial tumor in my left kidney and never a single symptom. Found by accident when checking something else. After a lot of a quick research and prayer I found the doctor I felt would take care of me. My kidney and ureter were removed. After having no tumors in my bladder a cystoscopy at 3 mths post surgery found two tumors in my bladder. One was near the site where my left ureter was removed. Every 3 months I had a CT and cystoscopy. Everytime a new tumor or two. Eleven mths after the kidney surgery I had a partial bladder removal to get rid of the troublesome spot but the tumors kept coming. My doctor too wanted me to keep my bladder as long as I could. I did 6 BCG and had tumors after. Then 6 doce/gem. No tumor in my bladder but with folowup CT I had a tumor on the outside of my bladder. Within a week I was in the hospital for surgery. I trusted my doctor and told him to do whatever would be best for me. I woke up with a RC and a Neo Bladder. That was 3 1/2 mths ago. I certainly will not say it has been easy but I do know it could have been much worse as well. My Neo Bladder is working fairly well, all things considered. I know that it can take mths to get it working really well. The worst thing now is fatigue. I don’t have the energy I used to have for sure but it is coming back. I am a 77 yr old very active female. My Doc understood this and picked what was best for me.

jowilliams1 | @jowilliams1 | Sep 21 7:36am

In reply to @krgordon "I was diagnosed in 2023. I had a large urothelial tumor in my left kidney and..." + (show)

It took six months to train my neobladder. My surgery was last November. I'm glad you were healthy enough otherwise to have that option. That surgery is a big one! I can understand your continued fatigue. Hang in there! Hopefully you'll have clean CT results moving forward. All my best to you.

fmfran | @fmfran | Sep 21 7:51pm

I had my first 6 BCG treatments with success. Then I had my 3 maintenance infusion's of BCG and my doctor found one suspicious area. We have not determined whether or not we will continue BCG or try something else. Trying the BCG one more time sounds OK. Make sure when you get it you move around in different positions so it covers the whole bladder plus a minimum of 2 hours. I’ll keep an in my prayers. My surgery is Oct 13.