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.

@peter51f

I am a 73 YO male. In mid Dec I started peeing brown blood and a few days later it turned red. Went to the ER and the CT scan showed growths on my bladder. Last week I had the growths removed during the biopsy procedure. My follow up with the urologist is in a couple days. So we shall see what he plans for recovery. Some of what I read was not very encouraging.
I just got my pathology report. some I understood some I did not.
Recap
A 2.5cm tumor was taken out for pathology. This tumor and 2 smaller ones were removed and area cauterized.
Extensive high grad papillary urothelial carcinoma. OK high grade (not good) cancer.
With Foci of Lamina propria invasion. The cancer cells were detected in next level tissue.
Definitive angiolymphatic invasion is identified. Not sure but sounds like cancer cells in blood and lymph nodes.
Small microscopic focus of muscularis properia not involved in the tumor. I think muscle layer does not have cancer cells

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I finished the BCG treatments 3 weeks ago. Last week I had my first follow up. He scoped my bladder and found 2 new areas that is suspicious. To me it looked liked the same growths I had in January. It appears I still have the cancer. My urologist has me scheduled in another week for a TURBT. Will do a scraping and cauterize and we shall see what the biopsy will find. So another couple of weeks of worry and scared of what they will find.

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First diagnosed five years ago. Had TURBT followed by BCG immunotherapy. Recently routine cystoscopy found recurrence, one papillary tumor, again high grade, non-muscle invasive. Just had 2nd TURBT 2 weeks ago. Will do BCG course again. Main concern now is when can I get back to regular exercise, (water aerobics, weight training, etc.)

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Hi! I'm new here. Just recently had my first TURBT last week and saw the lab results "invasive urothelial carcinoma high grade in lamina propria" in the providers phone app. I'm at home with a Foley catheter attached to me until next week when I meet with my local urologist to go over the lab results. I'm trying to see if anyone had ever requested their local doctor request a 2nd opinion to review the initial lab findings?

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@colleenyoung

@soniamargarita, it so good to hear positive stories. Thank goodness you did not delay in seeking medical attention when you saw signs of blood in your urine. Early detection is not always possible with bladder cancer. I'm glad to hear your story.

I wish you all the best for the upcoming follow-up appointment in August and look forward to hearing your update.

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it has taken 8 months before I could see my primary doctor for a referral . Meanwhile I paid to go see uroligist. , paid for blood work, MRI , all that for a diagnosis. Finally picked new primary doctor, saw him 3 days later and got my referral. Doctor and nurses are been really good and understanding for the time I didnt have insurance and now I on Cobra insurance because I lost my job

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@oldnavycomputertech

Hi! I'm new here. Just recently had my first TURBT last week and saw the lab results "invasive urothelial carcinoma high grade in lamina propria" in the providers phone app. I'm at home with a Foley catheter attached to me until next week when I meet with my local urologist to go over the lab results. I'm trying to see if anyone had ever requested their local doctor request a 2nd opinion to review the initial lab findings?

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In reply to my first post. I'm an over achiever. I started 2025 with a redo of a failed back fusion surgery of the L5-S1 at the end of January from my L2-L3 and L5-S1 fusion from last year. Went to the ER two weeks later for left leg swelling due to T2 diabetes. Doctors did tests and found a DVT blood clot in my right leg, most likely a result from the back surgery in January. Doctors also did an angiogram when I mentioned recent chest pains off and on from the past few months. I ended up with getting 2 stents in middle artery (widow maker) and left my right totally clogged artery to be done at a later date due to limitations of using dye during the procedure. Doctors started me on 2 blood thinners, one for my new stents and one to clear up the DVT in my right leg. Approx. 3 weeks later I'm back in the ER with gross hematuria (blood in my urine). CT scan showed a mass in my bladder and left pelvic. Doctors decided to stop the one blood thinner after tests confirmed the DVT in my right leg was no longer present. Cystoscopy confirmed the tumor. Had Cardio team and Urology team work together to determine ok to temporarily stop the blood thinner for my new stents long enough to complete the TURBT. Restarted the blood thinner for my new stents again. Ideally the blood thinner is planned for 6 mos. (3 mos. if needed to stop early) for new stents. Now waiting for Urology to let me know the official result of my TURBT and the next plan of action.

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@oldnavycomputertech

Hi! I'm new here. Just recently had my first TURBT last week and saw the lab results "invasive urothelial carcinoma high grade in lamina propria" in the providers phone app. I'm at home with a Foley catheter attached to me until next week when I meet with my local urologist to go over the lab results. I'm trying to see if anyone had ever requested their local doctor request a 2nd opinion to review the initial lab findings?

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Hi,
On Dec. 27, 2023 I had my first TURBT done. My pathology report came back in my portal as: urothelial carcinoma high grade, muscle invasive bladder cancer. The next day I reached out to Mayo Clinic Rochester for a second opinion. Within a week I was at the Mayo clinic and the diagnosis was changed to "NON" muscle invasive bladder cancer.
First diagnosis meant removal of my bladder, second didn't. So 1.5 yrs later I am still sporting my bladder and it looks like I will keep it for a long time to come!
I've received immunotherapy & chemotherapy and my last scans showed NED. Yahoo!
I am so grateful for Dr. Shah and his team at the Mayo Clinic!

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@oldnavycomputertech

Hi! I'm new here. Just recently had my first TURBT last week and saw the lab results "invasive urothelial carcinoma high grade in lamina propria" in the providers phone app. I'm at home with a Foley catheter attached to me until next week when I meet with my local urologist to go over the lab results. I'm trying to see if anyone had ever requested their local doctor request a 2nd opinion to review the initial lab findings?

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Wow, you have really been through the wringer with medical issues. To answer your question, we found that it was a good thing that we had a Mayo visit for an executive physical scheduled for my husband shortly after the local urologist said bladder was clear. He had looked at CT scan and done cystoscopy, had ignored a positive FISH test and the cytology of highly aggressive urothelial cell carcinoma. At Mayo they saw the bladder tumor on the CT scan read as negative by local radiologist and urologist. Mistakes do happen. Requesting a second opinion is always smart and can be done virtually nowadays.

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@sepdvm

Wow, you have really been through the wringer with medical issues. To answer your question, we found that it was a good thing that we had a Mayo visit for an executive physical scheduled for my husband shortly after the local urologist said bladder was clear. He had looked at CT scan and done cystoscopy, had ignored a positive FISH test and the cytology of highly aggressive urothelial cell carcinoma. At Mayo they saw the bladder tumor on the CT scan read as negative by local radiologist and urologist. Mistakes do happen. Requesting a second opinion is always smart and can be done virtually nowadays.

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Thanks very much for your response. This helps me going forward with trying to determine my future care. I'm trying to learn as much as I can to help me make somewhat educated decisions going forward.

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@janiem

Hi,
On Dec. 27, 2023 I had my first TURBT done. My pathology report came back in my portal as: urothelial carcinoma high grade, muscle invasive bladder cancer. The next day I reached out to Mayo Clinic Rochester for a second opinion. Within a week I was at the Mayo clinic and the diagnosis was changed to "NON" muscle invasive bladder cancer.
First diagnosis meant removal of my bladder, second didn't. So 1.5 yrs later I am still sporting my bladder and it looks like I will keep it for a long time to come!
I've received immunotherapy & chemotherapy and my last scans showed NED. Yahoo!
I am so grateful for Dr. Shah and his team at the Mayo Clinic!

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Great news on your path to recovery and fighting BC! This helps me going forward with making decisions for my care. Thanks for your reply.

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