Bladder Cancer Group: Introduce yourself and connect with others

@colleenyoung Thanks for posting those links, they are helpful and mostly it's good to know I'm not alone! I had by first session of gemcitabine and docetaxel last week, and it went so much easier than I expected. Still not fun, but I felt that I was in good hands. Was a little tired for a few days. My next treatment is tomorrow (Nov. 5) and I hope it goes as well, although from reading other people's stories I understand that the cumulative effects might be rough. But I'm positive and hopeful and grateful that I have a good doctor and great nurses!

Hi @annie72, I add my welcome and, like @sepdvm, would like to hear what you learned about your appointment. Did you find our type and stage of bladder cancer you have? What is next for you?

Hi @ksmcandle, you might be interested in these related discussions:
- Any other females here with bladder cancer in their 50s?https://connect.mayoclinic.org/discussion/54-yo-female-diagnosed-with-high-grade-bladder-cancer-1-5-years-ago/

- For Females with Bladder Cancer - Trouble with Administering BCG https://connect.mayoclinic.org/discussion/for-females-with-bladder-cancer-trouble-with-administering-bcg/

- Anyone had gemcitabine and docetaxel for Bladder Cancer? https://connect.mayoclinic.org/discussion/gencitabinedocetaxel-for-bladder-cancer/

How are you doing on gemcitabine and docetaxel?

Yes. I would very strongly recommend signatera, natera and imaging. The last thing you want to end up with is a full RC or worse once you are actually in surgery. Is your urologist a general urologist or oncologist urologist? My general urologist last year underestimated the urgency. So an oncology urologist is strongly recommended. Preferably at a NCI institute. Did he use blue light during his TURBT? CIS is notoriously difficult to detect and has a very high risk of recurrence elsewhere in the bladder, ureters and even upper tract.

@jaxfl
Thank you so much for that information ! I had my appointment this morning with the Urologist this morning. The recommendation was to remove the Diverticulum since all cancer activity was limited to that specific area. Having read what you wrote, i will be doing more research ! Again, thank you !

Diverticula typically have no muscle wall so the cancer can invade the fat rapidly. Plus become locally advanced.

My TURBT1 showed PT1AN0M0+CIS. TURBT2 (blue light) showed PT0N0M0+CIS.

RC was PT3AN1M0.

Only Mayo, MD Anderson and my local general urology group agreed with my assessment that immediate RC was warranted. Cleveland, University of Miami and Baptist South insisted on localized treatment only. The local general urology group proposed a partial RC.

High grade papillary + CIS is typically multifocal and very high risk and makes partial RC (diverticulum) infeasible.

Diverticula cannot be scoped deep enough during TURBT as the layer is thin and could seed malignant cells in the pelvic cavity

MD Anderson had no operating rooms for six weeks. Mayo did the RC exactly a week after my first meeting and I was put at the top of the list based on the risk.

We discussed neoadjuvant DDMVAC but given that it fails approximately 30% of the time and absence of a muscle wall that is risky.

Based on my RC pathology I did 4 out of 6 adjuvant DDMVAC cycles. A month later I started nivolumab ICI for 13 cycles.

I strongly recommend requesting signatera and natera. The first can provide assurance the malignant cells are still confined to the bladder, the second can provide genomic insight to guide therapy and assess risk plus assess PDL1, TMB and MSI.

Good luck!

Hello everyone,
My Story, 12 years ago I had a bout with bladder cancer (Low Grade). I subsequently was treated with BCG and all was good. I had an annual cystoscopy Sept of 2024. All was good.

August 2025, I had another cystoscopy, and a tumor was discovered. October 20, 2025 I had a Cystoscopy with TURBT. They doctor(s) removed two tumors and biopsied a suspicious red spot. The two tumors were diagnosed as High Grade Carcinoma and the red spot was diagnosed as Carcinoma in situ which is also considered high grade. I am in a different situation where all the cancer was located in a rather large diverticulum. Not sure if this changes things as far as the treatment goes, but I will keep you posted as I have a Appointment with the Urologist tomorrow in the AM.

Keeping my fingers crossed.

Since there is no muscle mass in the diverticulum, I assume this maybe non-invasive. But we shall see.

Any similar experiences would be appreciated.

Hello @ksmcandle and welcome to Connect. As you can see from my reply above to annie72, my experience has been with my husband's UCC and he did not have the Gem/Doce treatment. I have no doubt that if you look back through these posts you will find more ladies who have had this treatment, though this cancer is more frequent in men. There have been more drugs approved and other recent changes even since 2019 and saving the bladder is becoming more successful. Keep watching this list and researching so that you can make the best decisions with your health care team.

Hello @annie72 , Welcome to Connect. Did you get more information from your appointment today? The histopath from the tumor will be very important in directing your further treatment. My husband had an aggressive muscle invasive tumor in a diverticulum/pouch off the bladder that was resected and bladder infused with Mitomycin. After chemo, BCG, immunotherapy, and several TURBTS for recurrences, he elected to have a radical cystectomy with neobladder. This began in 2019 and he is now clear of cancer but it has been quite a battle. Go into your appointments armed with questions about length of treatment, side effects, and possible complications. It is hard to know what to ask, but every question you have is important enough for your medical team to give you an answer. Keep us informed.

Hello, I'm Kay, aged 72. Had TURBT procedure on October 6, with Mitomycin inserted into bladder following procedure. I will be starting treatment with Gemcetabine and Docetaxel next week. I'd like to hear from other females about the side effects, especially pain upon urination and irritation, and if there are any suggestions to deal with that. Thanks! (I may not have the exact spelling of those chemo drugs!)