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BCG failed… whats next?
Diagnosed Summer 2023. Had 2 surgeries to remove tumors. Then had 6 weeks of BCG. Then off a bit. Then 3 weeks of BCG. Had a scope and the doctor didn’t like a few spots. Just had 3rd surgery to biopsy the spots. 2 of 3 came back with my hi-grade cancer. I get the catheter out tomorrow.
My team of urologists are chatting this week but I think they are leaning toward removing the entire bladder. Good move? I’m only 55. Get a second opinion? Other options people have tried?
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10 Replies
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Thanks for the update and good luck.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
Thanks to everyone that has responded. It has helped figure out a path forward.
My Doc hooked me up with a few past patients that had the surgery but different diversions. Which was great to talk to those guys.
The current plan is that we are moving forward with the different type of chemo over the BCG and see how it goes over the next 3 months. I think the first scope after the 6 weeks of chemo will be telling but I’m willing to given it a chance.
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I have T1-Hi grade for 8 years unable to remove bladder due to previous surgeries. I failed BCG at 22 months with 3 returns was put on just Gemcitabine no Docetaxel 6 years ago, scope x 3 months followed now by 3 weekly instillations maintenance dose…..hasn’t returned and minimally problematic in my life. So there is my case the Gemcitabine definitely saved my bacon when Gold standard BCG near killed me at 106 temperatures.
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Sorry about the crossroads in this journey. Looks like you are choosing the best option: life. MANY that have been on this board have gone through this over the years. I personally have 2 friends go through this. One at age 84 (5 years ago) and another around age 40 (10 years ago). BOTH are satisfied.
While I have not had to face this and can’t answer directly to your choices, I have bookmarked the best site for explaining all 3 options. The only thing I add. Be sure you pick a surgeon that does at LEAST 20-25 of these a year. You want real experience on this one.
Urinary Diversion: What Is It, Types & Surgery Options (clevelandclinic.org)
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
Sorry about the crossroads in this journey. Looks like you are choosing the best option: life. MANY that have been on this board have gone through this over the years. I personally have 2 friends go through this. One at age 84 (5 years ago) and another around age 40 (10 years ago). BOTH are satisfied.
While I have not had to face this and can’t answer directly to your choices, I have bookmarked the best site for explaining all 3 options. The only thing I add. Be sure you pick a surgeon that does at LEAST 20-25 of these a year. You want real experience on this one.
Urinary Diversion: What Is It, Types & Surgery Options (clevelandclinic.org)
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
Sorry about the crossroads in this journey. Looks like you are choosing the best option: life. MANY that have been on this board have gone through this over the years. I personally have 2 friends go through this. One at age 84 (5 years ago) and another around age 40 (10 years ago). BOTH are satisfied.
While I have not had to face this and can’t answer directly to your choices, I have bookmarked the best site for explaining all 3 options. The only thing I add. Be sure you pick a surgeon that does at LEAST 20-25 of these a year. You want real experience on this one.
Urinary Diversion: What Is It, Types & Surgery Options (clevelandclinic.org)
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait. -
So had the meeting with the head Doctor. And he was really thinking the correct road forward is to remove my bladder as compared to doing the Gemcitabine+Docetaxel. Mostly given the high grade of my tumor and how the cancer came back during BCG treatments.
Does anybody have experience? Huge decision it seems If I do the chemo and it fails, then I’m right back here. Just time lost but the Doctor talked about the cancer moving to other parts of the body and the risk associated with that. He thought the way forward was to remove my bladder.
And I know this is a loaded question, but thoughts on a stroma or a neobladder? I am so torn on which one would be the best for me. Another huge decision.
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Thanks for the feedback. That helped.
The plan is to do another surgery in 2-4 weeks to confirm margins and then another round of chemo but this time with Gemcitabine+Docetaxel and go from there. I like the plan. Not rushing into anything.
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Hi Shepman,
Until recently, there were no drug/treatment available for those tumors which did not respond to BCG treatment. There was one FDA approved drug Valrubicin, but it was approve over 20 years ago and efficacy was not so good, so I do not think it is being offered. Often single chemotherapy drug such as mitomycin, gemcitabine was used for BCG unresponsive. But now there are four FDA drugs are available for BCG unresponsive, and several drug/treatment are in later phase of clinical trial.
Pembrolizumab (Keytruda) alone Checkpoint Inhibitor Intravenous FDA approved
Gemcitabine+Docetaxel Existing drugs Intravesical Did not require FDA approval
Nadofaragene (Adstiladrin) Gene Therapy Secreting IFN Intravesical FDA approved
Anctiva + BCG IL15 Superagonist +BCG Intravesical FDA approved
Still on clinical trial
TLD-1433 Photodynamic Therapy Intravesical+Laser Phase 2B
TAR-200 Device to secrete chemo Intravesical Phase 2
Cretostimogene Oncolytic Immunotherapy Intravesical Phase 3
Cretosmitogene + Pembro Oncolytic Immunotherapy Intravesical/Intravenous Phase 2Pembrolizumab +BCG BCG+ immunotherapy Intravesical/Intravenous Phase 3
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Shepman,
Welcome. We are simply sorry for the situation. Yes, you do have some serious and fairly quick decisions to make. First, many would encourage you to get a second opinion. If you do, you want to get to a place that sees a LOT of bladder cancer. Maybe a teaching hospital or research hospital. I am saying someplace like M.D. Anderson, Sloan Kettering, John Hopkins, Cleveland Clinic, Northwestern U, USC etc. A second opinion often corroborates what your first URO sees but, it is fresh eyes and can lead to alternative ideas.
Your own URO is probably aware of some other agents that are being used. From Joea73’s research on our own board see: A Randomized Phase III Trial of Intravesical BCG versus Intravesical Docetaxel and Gemcitabine Treatment in BCG Naive Non-Muscle Invasive Bladder Cancer (The BRIDGE Trial) – NCI
Also: BCG treatments – Bladder Cancer Support Forum
Sometimes, interferon is added to BCG. I haven’t read much about the past few years as showing a lot of success.
Just be sure to choose a path that still leads to life. If it does come to a cystectomy, MANY from this board will tell you they lead very productive leads with few restrictions. Here is a link with good pro’s and con’s from the Cleveland Clinic: Urinary Diversion: What Is It, Types & Surgery Options (clevelandclinic.org)
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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