Newly diagnosed with bladder cancer 5-28-26. Seeking input on options
Diagnosed with bladder cancer 5-28-26. Diagnosis is "Carcinoma of the bladder with the following features: Histologic Grade (WHO/ISUP 2016): High Grade. Invasive into lamina propria. Invasion into lymph nodes or Muscularis propria not identified"
I begin considering treatment options 6-8-26. Obviously need info on lymph nodes & bladder muscle invasion but does anyone have experience with treatment options, outcomes and side effects with this diagnosis? I am a 92 year old male with Parkinson's Disease (17 years) Prostate cancer (2016) & Colon cancer (2019).
I will appreciate your response!
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First off, I'm not a doctor. But reading what you put down it seems like it could be somewhat good news. There seems to be no muscle involvement which is excellent. When I was diagnosed I had two follow up cystoscopies with TURBT. Both came out negative for muscle involvement. I finished six intravesical chemo installations of gemcitabine/docetaxel last Friday as I also had no muscle involvement. The installations are done by catheter which are unpleasant but result in less side effects. I also had prostate cancer in 2023 with a recurrence in 2024. Since your last sentence states, "invasion into lymph nodes or muscularis propria not identified", it sounds like you caught it early. Good luck my friend.
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3 ReactionsTo add to what bassmeister wrote, I would suggest you ask your doc to check if BCG will work for you before he sends you down that route. This may be done using the Vesta AI system. If BCG is found to be inappropriate, then the Gem/Doce treatment is as good if not better, with few if any side effects.
Best wishes and good luck.
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1 ReactionWhat is the Gem/Doce treatment?
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1 ReactionSuggestion: go to http://www.bcan.org (Bladder Cancer Advocacy Network) and download their Bladder Cancer Basics Handbook, if you don't already have it. I found it quite helpful when I got my diagnosis last year.
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1 Reaction@yellowjacket It is chemotherapy. Gemcitabine(Gem)and doce…not sure what that is. My husband received Gemcitabine and Cisplatin when he was diagnosed with bladder cancer. Excellent for stopping the cancer from progressing.
My husband (80 yrs old now) was diagnosed in spring of 2024. He has been in the BRIDGE trial since July of 2024. It is a huge trial to see if gemci/doce is as good if not better than BCG. He is in the gemci/doce cohort and finishes 24 monthly infusions in August with a cysto every 3 months. He has been NED(no evidence of disease) for two years of treatment. He has had one UTI but really no other side effects except fatigue which has improved a bit. I should add he has always exercised, eaten a healthy diet and never smoked so hopefully that has helped him but we do know of one other participant who is a good bit older, mid to late 80s, finished treatment, had follow up cystoscopy, and is also NED. We await the trial results to see if gemci/doce is as good as or better than BCG for participants in the trial.
I, too, have T1 NMIBC with CIS, high grade, that has reached the lamina propria, but not the muscle wall, and had Valar Labs perform a Vesta test on my last pathology sample. The test is not dispositive for my treatment team, but it certainly is useful. It will tell you if you have the biomarkers that predict the efficacy of BCG treatment, and where you rank in their cohort for probability of recurrence, and of progressing to muscle invasive disease. The BCG treatment side effects are tolerable (at least that is my experience), with fatigue being the predominate problem. I've had procedures at Mayo Clinic - Rochester, the Buffett Cancer Center in Omaha (an NCI rated facility) and, previously, with a local urologist, using first BCG (2024, six treatments resulting in NED), then Adstiladrin (2025, three treatments then recurrence), and now BCG again (three treatments so far). My local urologist stopped the BCG in 2024 after six treatments due to the nationwide shortage of BCG; I should have had a total of twelve. My doctors at Mayo and Buffett both tell me a full course of BCG is the best option for me. I hope they are right. I wish you the best with difficult decisions, and the road ahead.
@yellowjacket, it is Gemcitabine and Docetaxel. I had six sessions, one each week. First they put in a catheter and fill the bladder with the gemcitabine. You hold that in for an hour and then they come in and drain it out. Next they put in the docetaxel, pull the catheter and you leave with instructions to hold it in for at least another hour. In my case they do not put in so much that you feel the urge to pee right away. I had no problem holding them in. My urologist said there was a BCG shortage and this was a promising replacement. Studies show that gem/doce is better tolerated than BCG with fewer adverse reactions.
Lots of good info on Gem/Doce here, which appears to be a good option for some. But my oncologist at the Anschutz Cancer Center at the University if Colorado Hospital tells me that the gold standard treatment for noninvasive stage 1 bladder cancer is the BCG immunotherapy treatment regimen. I also understand that the bio marker test for whether BCG will work is inconclusive. I just got my first induction treatment of BCG recently and had virtually no side effects, plus the treatment itself is quicker than that for Gem/Doce. My final suggestion is to go to a top notch cancer center. I have heard of problems with misdiagnoses and this is too important to be given bad info.