Bladder Cancer Group: Introduce yourself and connect with others

Welcome to the Bladder Cancer support group on Mayo Clinic Connect.

This is a welcoming, safe place where you can meet people living with bladder cancer or caring for someone with bladder cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

Feel free to browse the topics, use the group search to find answers to your questions or start a new discussion.

Pull up a chair. Let’s start with introductions.

What type of bladder cancer were you diagnosed with? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

@colleenyoung

@fukunishi, it is hard to be a long distance caregiver. I'm sure you worry about your sister a lot. Will you go to Tokyo to visit her?

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Yes. She will take second Padcev Infution on May 28th. If her condition gets worse, I will Goto Tokyo to take care of her because she is single. I hope this treatment will be effective to her cancer.
She went toplay golf to fight against her cancer. She is very strong minded.

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@swh

I have appts at Mayo this coming week to do more tests & meet the urologist. Their interpretation of the path report is high grade papillary urothelial carcinoma with inverted growth with concern for lamina propria invasion. I'm trying to stay calm as I await further results.

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Hello @swh, that wait knowing cancer is present is tough. I'm glad that this week will bring you some answers and hopefully a treatment plan. There are new primary treatments being used and having success which is leading to the ability to save the bladder, even more so than a few years ago when my husband was being treated. Be sure to ask about this if it doesn't come up in discussion. In 2019 we were initially hit with the standard of care being radical cystectomy, which is quite a blow when you are first diagnosed with bladder cancer. Make sure all your options are discussed. My husband experienced BCG, Cisplatin and Gemzar chemotherapy, and Pembrolizumab immunotherapy as well as a partial cystectomy to remove a diverticulum off the bladder that held his initial tumor. In the end after medical treatment failures and regular recurrences, he chose his best option for cure with radical cystectomy. He has been free of cancer for 1.5 years since then, but many complications from surgery.
Dr. Mark Tyson is the Mayo urologist studying the bladder sparing treatments. I hope you are able to benefit from this new information. Please keep us updated after your visit this week.

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Thank you so much for your response. Did your husband choose neobladder or a stoma?

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Hi I’m Scott. Diagnosed with cancer several weeks ago. Had 1st surgery where tumor removed from top of bladder. Cancer was more aggressive type. Chemo done in recovery
2nd staging set for mid June to see if cancer has progressed in wall or muscle.

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Is it usual to have 2nd Turbt 4 weeks1st turbt surgery

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@scott232

Is it usual to have 2nd Turbt 4 weeks1st turbt surgery

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Mayo just scheduled me for a 2nd turbt to determine how far the tumor has penetrated and identify if there is any invasion in the muscle layer, since it was had to tell when debulking a large tumor the first time. From what I have read this is recommended often to differentiate NMIBC from MIBC.

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@swh

Mayo just scheduled me for a 2nd turbt to determine how far the tumor has penetrated and identify if there is any invasion in the muscle layer, since it was had to tell when debulking a large tumor the first time. From what I have read this is recommended often to differentiate NMIBC from MIBC.

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Thanks much

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@scott232

Is it usual to have 2nd Turbt 4 weeks1st turbt surgery

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Hi Scott, that's exactly what the doctors did to me when I was diagnosed in '21.

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@talltxlady

Hi Scott, that's exactly what the doctors did to me when I was diagnosed in '21.

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Thank you.

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just diagnost with invasive bladder cancer in the muscles of the bladder really worried thanks

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