Bladder Cancer Group: Introduce yourself and connect with others

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.

@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.

@sepdvm thank you Sue for sharing your husband's experience. He certainly has been through a lot, but at least he is now cancer free for 4 years!

@pol7 your history sounds a bit like my husband’s. Tho his initial tumor was muscle invasive in a small diverticulum off the bladder. He was treated once with gem/doce after surgery to remove the diverticulum and tumor. One lymph node was positive so instead of continuing that he had Cisplatin infusions for 6 months. Then he was a BCG failure once on maintenance BCG. He tried Keytruda but no improvement. He finally elected radical cystectomy with neobladder as he was tired of the pattern of repeated Turbts. He is cancer free now 4 years after that surgery. Not really helpful for you facing gem/doce but likely others will chime in with their experiences.

Hello all, I'm new to the group. I'm a 78 year old male in Virginia. My first bladder cancer discovery was in 2017. It was high grade, aggressive, non invasive. I had BCG treatment after the TURBT and was clear for almost a year, when it returned. Same thing, same treatment. Since then, I have had 3 more TURBTs for low grade, non invasive tumors, and I lost my right kidney to cancer in April 2024. I have since been cancer free until now. This past Tuesday I had TURBT for a large, low grade tumor, but this time it had penetrated into the middle lining... but not into the muscle lining. Dr was surprised at it's size because I was clean when he did the last scope 6 months ago. He is now giving me 2 options.
(1) Scope me again in 3 months to see if I'm clear. If so, continue scoping every 3 months rather then 6.
(2) Start treatment of Gem/Doce because BCG doesn't seem to work for me, and scope me for continued observation.

I would be interested to hear from anyone who has had similar conditions and treatments, especially the chemo treatment that I seem to now be facing.
Thank you!
pol7

@sepdvm
Hi Sue, thank you for your help which I appreciate.

Apparently even though I was unable to view my own post, at least it appeared to those in the group.

From here on in, if I compose a lengthy post I will be sure to type it in word pad first and then place it in the message area.

Thank you again for your kindness.

Best wishes and may 2026 be sprinkled with joy and hope.

Bobbie

@sepdvm and @deidre77,

Unfortunately, I cannot find the rest of the message from the back end. This appears to be an unfortunate case of the internet gremlins. When writing longer posts, I personally will use another program like word, google docs or the notepad function to write out the post and then copy & paste it to Connect. This way if you happen to have a blip in the internet while posting you don't lose your entire post in the process.

Sorry for the inconvenience this case though.

Hello Bobbie @deidre77 . I also reported your lost post so we will see if anyone can find it for you. You might have to replace it yourself but let's see if the moderators can help.

I’ve been diagnosed with the earliest stage hopefully. It’s a recurrence from a decade of being NED. At that time I had early stage and a turbt. Dorothy

@littlemom

Hi Anne,

Nice to meet you. I was surprised you were able to read my entire message since when I went back in to ensure what I had written was OK, for some strange reason it was abbreviated and only part of the first sentence was there. I then requested some assistance but since this is the weekend, there will be no response yet.

If you were able to read my entire message, then how come I was not? Very strange indeed.

Thanks for saying "hello".

Here's wishing you, I and all our fellow sufferers a year filled with hope.

Best wishes,
Bobbie