Bladder Cancer Group: Introduce yourself and connect with others

CIS is a complex disease to fight. Often only fully visible with blue light TURBT.

Intravesical chemo (GEM/DOCE) is common. ICI with(out) chemo is exceedingly rare (new and prohibitively expensive).

The longer you have CIS the more risk.

Good luck!

Totally agree, but NET oncologist backed up my Oncologist with treatment so far. Every time I see my oncologist I ask what next step is if BCG doesn’t work. There is no sign on PET/CT of reoccurrence of SCC so far. High grade CIS now in 2 areas of the bladder. Having difficulty with BCG with reoccurring UTI despite antibiotics. Oncologist says he will next try intravesical chemo & if that doesn’t work a different immunotherapy. Maybe my Urologist wants to discuss Cystectomy with me on Friday…

Any variant is typically far more risky than regular UC. In the US many MDs would suggest RC in such a scenario. Especially when it is papillary+CIS. Small cell is recognized as one of the most aggressive forms of bladder malignancy. It accounts for less than 1% of all bladder cancers and is characterized by a high propensity for early systemic metastasis. So 6 month PET seems odd. Every 3 months seems more appropriate with cytology (AUA/NCCN/EAU).

Hi tc72,
I’m sorry to hear about your husband. I was diagnosed FEB 24 with Small Cell Bladder Cancer. It’s very rare as you probably know. I was completely shocked to see what first comes up on the internet with this cancer. My cancer was mixed with high grade urothelial cancer. Supposedly both were limited to urothelial layer. Guess the first thing the oncologist will do is to get a CT/PET scan. Make sure it is FDG & not dotatate. As the scans are more accurate with FDG. Once this is done, then you will be made aware of where your husband stands with staging & treatment. I had genetic testing, which didn’t show any correlation. I also asked to see a specialist Neuroendocrine oncologist. The They treated me with 4 cycles of chemotherapy & then another 4 weeks of chemotherapy and full pelvic radiotherapy. I got through that okay, but now wear hearing aids due to the chemo, peripherally neuropathy in feet, did loose my hair, but it has since grown back. Surveillance is 3 monthly Cystoscopies with biopsy and the PET CT scans every 6 months. (That’s here in Australia) I am currently dealing with the return of urothelial CIS and having BCG treatment. Please let your husband know he is not alone with this cancer. My heart goes out you.

My husband just diagnosed with small cell neuroendocrine bladder cancer. Looking for any and all suggestions and help. He is a 72 yr old man who has always been extremely active and hard working.

Hi Colleen, thank you for following up. Last week's cytoscopy (4 weeks post op) was described as "good". I'm told there was dead tissue and an area that was of interest to biopsy. The biopsy could not be done safely in office. Out of an abundance of caution, the urologist asked me to proceed with the second look TURBT Wednesday of this week. This will hopefully confirm the Ta NMIBC high grade diagnosis. Once healed enough I surmise I can begin the Gem/Doce 6 week course. There is a prostate biopsy pending that also needs to be scheduled.

@raybnyc, welcome. How did the "second look" cystoscopy go? Did you start chemo treatment? How are you doing?

Did they do cytology (looking for urothelial cells) and/or signatera or another ctdna tracker? I would recommend those. Plus a DNA panel such as Altera.

Perhaps switching to chemo or chemo+immuno is an option.

Topics to discuss with the oncologist.

Hi. I'm Ray from Aventura FL. 61 year old male. I was diagnosed with High Grade Ta Papillary Urothelial Carcinoma (Non-Muscle Invasive) following my primary TURBT on Dec 8 which removed multifocal tumors one large (8cm). I spent one night in the hospital for observation after surgery. I had a catheter for a full week. I’m currently 3 weeks post-op, past the sloughing phase, feeling physically strong. Emotionally rebounding after having made it through recovery and a worry filled wait for the pathology.

My next steps include a 'Second Look' cystoscopy next week, followed by a 6-week induction course of Gemcitabine and Docetaxel intravesical therapy.

I am incredibly grateful for my urology team and relieved to have a clear roadmap for treatment. I'm also happy to have found this group! Thanks for sharing your journey and asking such great questions!

@charlesk9, this sounds like a lot to handle. Did they figure out a treatment plan for you? What is next? How are you doing?