Muscle Invasive Bladder Cancer

Posted by rose1966 @rose1966, Jan 31 5:20pm

My husband Dwight, is 63 yrs old and just was told that he has Muscle Invasive Bladder Cancer. I think Stage 2 or 3 from Pathology Report.
The Urologist called and told us the steps:
1.Medical Oncology…The oncologist will call us to start Chemo.
2.Chemotherapy
3.Radical Cystectomy
4.Dr.Harold Tara from Yale …He is an oncologist who Dwight will be treated by.
The Urologist said it was not metastatic, thank the Lord.
We know this is a fast moving cancer and I am praying 🙏 morning , noon and night.
Has anyone been through all this?

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@rose1966

My husband just had a Radical Cystectomy on May 29th. He’ll be coming home tomorrow. He had been diagnosed with Stage 2 MIBC. He had 8 hookups for Gem/Cis and a month later the RC. He seems to be doing well. Still has JP drain and gives himself shots to prevent blood clots for a month…also, getting used to the urostomy pouch. He said he needs help getting up , but once he’s up…he can walk and walk. I have soups, Protein Shakes, mashed potato’s, applesauce, pancakes, and 3 Liters of water a day. Now we are waiting for the Pathology Report. The surgeon said he took out all lymph nodes and saw no metastatic cancer.

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I'm glad he's doing so well! It sounds like you're taking terrific care of him!

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@grannykaka

I was diagnosed in December 2024. /first cystoscopy 12-24-24…I have had 3 cystoscopes w/last one performed on 5-29-2025…..has anyone else had muscle invasive Bladder cancer and if so any info for me. I am doing the BCG treatment and wondering if anyone else has done or is doing this treatment. 3 times in 5 months and it isn’t leaving my bladder? Anyone with advice?

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Hello @grannykaka. Welcome to Mayo Connect bladder cancer. Having muscle invasive aggressive urothelial cell carcinoma is a higher risk of recurrence and metastasis. My husband had this diagnosis 5 years ago. He had surgery to remove the mass because it was in a pouch off the side of the bladder, so that pouch and many lymph nodes were removed (a partial cystectomy). He then had chemo and then BCG but new areas in his bladder kept recurring. After a couple years of this pattern with subsequent TURBTS to remove or cauterize the spots, and a trial on Keytruda, an immunotherapy approved for bladder cancer, tumors kept recurring. He had his bladder removed and a neobladder formed instead of an ostomy. Bladder cancer likes to return and I would be asking your medical team about Keytruda or other treatments. If necessary look into a referral for a second opinion, preferably at a large cancer center or referral hospital. Do you have a large cancer center nearby?

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@grannykakIa, I echo @sepdvm's suggestion about getting a second opinion. BCG is primarily used for high-risk non-muscle-invasive bladder cancer (NMIBC) to prevent recurrence and progression and is not typically recommended for bladder cancer that has invaded the mucsle.

Do you have muscle-invasive bladder cancer (MIBC)? Or did I read that wrong?

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@rose1966

My husband just had a Radical Cystectomy on May 29th. He’ll be coming home tomorrow. He had been diagnosed with Stage 2 MIBC. He had 8 hookups for Gem/Cis and a month later the RC. He seems to be doing well. Still has JP drain and gives himself shots to prevent blood clots for a month…also, getting used to the urostomy pouch. He said he needs help getting up , but once he’s up…he can walk and walk. I have soups, Protein Shakes, mashed potato’s, applesauce, pancakes, and 3 Liters of water a day. Now we are waiting for the Pathology Report. The surgeon said he took out all lymph nodes and saw no metastatic cancer.

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During my RC, they found cancer in 1 of the lymph nodes of the 24 removed.

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@hmmm

During my RC, they found cancer in 1 of the lymph nodes of the 24 removed.

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@hmmm Hi Tanya , my husband didn’t get the Pathology report yet. We go see the surgeon tomorrow. He wants to get the JP Drain out…hopefully that can happen. The Surgeon said he took out all the lymph nodes. Are you doing immunotherapy once a month?

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@jowilliams1

I'm glad he's doing so well! It sounds like you're taking terrific care of him!

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@jowilliams1 Thank you, Jo :-))))

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@rose1966

@hmmm Hi Tanya , my husband didn’t get the Pathology report yet. We go see the surgeon tomorrow. He wants to get the JP Drain out…hopefully that can happen. The Surgeon said he took out all the lymph nodes. Are you doing immunotherapy once a month?

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Yes once a month

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Nivolumab (opdivo) is the standard for adjuvant treatment after positive node pathology after RC surgery. In my case I had adjuvant DDMVAC first (as I was upstaged after surgery I was never a neoadjuvant DDMVAC or CG candidate). Typically, it is coupled with signatera ctdna monitoring. In my case Northstar Response ctdna monitoring was also added. Signatera is tumor informed (TURBT and/or RC tissue based). Northstar Response is agnostic methylation based (blood/plasma only: no tissue). Interestingly, Northstar Response has a new more sensitive assay that now explicitly excludes using it for MRD and recurrence monitoring.

If you are going to receive nivolumab there are some boosters: claritin/zyrtec according to MD Anderson, CBM-588 according to many studies, camu camu (castaligin) according to some studies, akkermansia according to many studies. After neoadjuvant or adjuvant chemotherapy and/or antibiotics for related infections, the gut is severely depleted of beneficial bacteria. This hampers the efficacy of nivolumab (and other similar immunotherapies such as durvalumab, avelumab, pembrolizumab and atezolizumab although durva and atezo are rarely used anymore for MIBC).

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