Bladder Surgery to remove and determine stage, type, etc..

Posted by stans2000 @stans2000, Feb 6 10:02am

I am 52 years old. I have never smoked, but I did serve in Iraq 20 years ago where I worked near the burn pits (Toxic Exposure). On Christmas morning, while at the airport to fly to Arizona I had blood in my urine a couple of times. I quickly made an appt with my doctor for Jan 3rd. When I landed, no more blood or thereafter. Well, I kept the appt and all my tests came back normal. There was no microscopic blood in my urine. He decided to schedule a CT scan (Jan 17th) just to make sure and 9 days later he called me on a Sunday night (Jan 26th) and gave me the news. I have a mass 2.9cm x 2.8cm x 2.2cm in my bladder. No findings for metastatic disease in other areas. We were able to get an appt with a Urologist (Jan 28th) for a Cystoscopy. Based on his findings and he took pictures, I have Papillary tumors. During the Cystoscopy they took some urine for tests. They found numerous microscopic red blood cells in the urine. He didn't take a Biopsy but decided to go ahead and schedule surgery (Feb 13th) for Bladder tumor scraping, biopsy, and cauterize the area to stop the bleeding. I will leave with a Foley Catheter, which will be removed on Feb 17th. I won't know the results (Stage, Grade, type of cancer, non-invasive or invasive) until my follow-up Feb 27th. It seems like a long time to wait given others on here received their reports in a couple of days. Maybe my pathology report will be available to me earlier through my online medical records.
Should I get a PET Scan? Can anyone tell me what recovery is like? What should I expect going through this process?

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Profile picture for skybolt @skybolt

Hello, thanks for checking in with us. My husband’s pathology reported T2 MIBC. Because it is a mixed histology ( urothelial, 40% glandular and 5% trophoblastic) the oncologist wants to do neoadjuvant chemo, ddMVAC, the cycstectomy then adjuvant with immunotherapy. We were hoping for trimodal treatment to keep bladder. We are planning a second opinion at MD Anderson. We will do what it takes to be cancer free.

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@skybolt hello…my husband is also T2 MIBC. He has finished with 4 rounds of Gemcitabine/Cisplatin. Did well with it. Just some fatigue…but he was still able to work at his desk job. Then, he went for a CT Scan w contrast. Nothing spread. Now, on May 29th he goes in for a radical cystectomy with prostate removal…to prevent it ever metastasizing 🙏. We asked about the TRIMODEL , but my husband hated the TURBT…and he didn’t want to go for it on a continuous basis. There is someone on here that has done the TRIMODEL Treatment and he didn’t well. Praying that your husband is cured! 🙏🙏🙏🙏🙏

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Trimodal requires a lot of follow-up and treatment. Especially the radiation is repetitive and can result in significant bladder dysfunction. That can remove any benefit from the treatment.

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Profile picture for rose1966 @rose1966

@skybolt hello…my husband is also T2 MIBC. He has finished with 4 rounds of Gemcitabine/Cisplatin. Did well with it. Just some fatigue…but he was still able to work at his desk job. Then, he went for a CT Scan w contrast. Nothing spread. Now, on May 29th he goes in for a radical cystectomy with prostate removal…to prevent it ever metastasizing 🙏. We asked about the TRIMODEL , but my husband hated the TURBT…and he didn’t want to go for it on a continuous basis. There is someone on here that has done the TRIMODEL Treatment and he didn’t well. Praying that your husband is cured! 🙏🙏🙏🙏🙏

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I will be praying for your husband and you on 5/29, that all goes smoothly and swift recovery. Thank you for your support and info to help us with decisions, especially about the chemo journey.

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Profile picture for jaxfl @jaxfl

Trimodal requires a lot of follow-up and treatment. Especially the radiation is repetitive and can result in significant bladder dysfunction. That can remove any benefit from the treatment.

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I did read of radiation destroyed bladders and intestines inadvertently.

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Profile picture for jaxfl @jaxfl

This is the first time I read about urothelial mixed with glandular carcinoma. Scary stuff.

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Hi jaxfl, I’ve been reading that with improved technology histology readings are more refined and up to 25% of bladder cancers have mixed histology. https://pubmed.ncbi.nlm.nih.gov/38849276/

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Interesting. My 2024-12-04 Signatera Natera noted 100% regular UC.

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