Bladder Cancer Group: Introduce yourself and connect with others

@colleenyoung Colleen and other members, The second pathology showed extensive lamina propria invasion with focal abutment of the muscularis propria; definitive muscle invasion couldn’t be ruled out. Imaging (MRI pelvis, CT chest/abdomen) shows no spread. Given tumor volume, depth, and staging uncertainty, my team is treating this as early muscle-invasive disease and recommending neoadjuvant cisplatin-based chemotherapy (guided by Univ Miami /Sylvester GU Medical Oncology) followed by radical cystectomy at a high-volume center, with curative intent (performed at Cleveland Clinic FL). I’d appreciate hearing from others who faced a similar T1 vs early T2 gray-zone decision.

Had left kidney removed in 2024 that had cancerous tumor. Six months later had 2 small tumors removed from bladder. Jan 2026 Cystoscopy revealed several high grade papillary urothelial tumors on bladder. Dr. stated he removed all of them and started BCG treatment. My first one was last Friday January 23, 2026. So far only very mild side effects. Dr Krishnamurthi at the Cleveland Clinic Main Campus has done all my surgeries.

Laparoscopy surgery Oct25 to remove 6cm tumor on the outside of my upper ureter near calyx of kidney. PET scan Jan 20 revealed 7mm ‘node’ in retro peritoneal space. Oncologist recommends Pembro tx (Keytruda)for forseeable future. Should I just have kidney et al removed? I am healthy 82 year old lady and my only real complaint is frequency…

@treeman1942
How is the immunetherapy going? Oncology wants me to start Keytruda post removal of Upper ureter tumor.. now 7mm node appears 3 mos post op. I am healthy 82 year old and am concerned my last years will be full of side effects and quality of life will be poor. How r u doing?

@judyhigbee

Good afternoon, Judy,

I quit immunotherapy after five months because it was killing me; I couldn't eat, was exhausted all of the time, etc. That was last May & I asked the doctor at the cancer clinic how much time I'd have left, to which he said six months ot less. Since quitting that immotherapy, I've steadily regained my appetite, balance, and strength. In my opinion, I'm recovering from the immunotherapy, not the bladder cancer.

In hindsight, I would not endure that immunotherapy; it destroys quality of life, and the cancer wasn't known by me until my VA doctor found it, saying I'd probably had the cancer for many years. I had no symptoms. Yes, it's possible that the immunotherapy gave me a few more months of life, but it destroyed my quality of life. My appetite is slowly returning, my strength and balance, too. I lost 45 pounds during the treatment, but have gained 10 back.

The VA covered all of my expenses; however, the cost to my insurance for the immunotherapy was over $500,000, of which the VA paid all of the deductible.

Would I go through immunotherapy again? No way. Please let me know if you want more of my opinion on that issue. You can contact me through this site or private message for email.
In whatever you decide, God bless you & I wish you the best.

@judyhigbee
I'm 78 years old and I've been dealing with bladder cancer since 2017 and have had several tumors removed over the years. In 2024 my annual scan found a tumor in my right kidney and 3 in the ureter. The kidney, ureter, and a small section of my bladder were removed. You can live with only one kidney. Good luck with your situation. 🙏🏻

@janine1991 Thank you for sharing about the difference in catherization products. I have noted them for my up coming surgery on 2/2. I am so sorry you are dealing with blunders, it’s just so awful. Sending you strength.

@pol7 hi, they found a 3cm tumor on my left kidney in an are hard to reach through urethra. I had no symptoms at all. They watched it for 6 years without symptoms. It got to 5 cm and Dr decided to remove kidney as it was confined to my kidney and couldn’t be removed and save the kidney. That was 2 years ago. I have no limitations. Have gotten some urothelial cancer cell on bladder wall. All have been removed and started bcg treatments. You do what you have to do to beat. Everyone is different their bodies react differently. God bless. Harry

@pol7 I was diagnosed with NMIBC in October 2024. I will be 77 this summer. I am in otherwise excellent health. My original physician wanted to take a wait and see approach, going in for a cystoscopy every three months. I wanted BCG. He didn’t prescribe it. After a recurrence three months later, and a TURBT, he still wouldn’t budge. I ha another recurrence and then had six weeks of Gem/ Doce. My next cystoscopy was clean. Three months later, I had another recurrence. Clean the next time around. I changed physicians after the six week treatment regimen. I am glad I did. I tolerate the Gem/Doce reasonably well. But I am tired for a day or so after. The literature suggests that Gem/Doce may be nearly as effective as BCG. If it fails for me, I will go on BCG. Good luck.

I've finished my 6 treatments and now on 1st maintenance treatment next week. Check up yesterday told the doctor that my left ureter is still swollen so now they want to watch my kidney function. I'm not sure if I should worry about it or wait and see.