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Bladder Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, May 17, 2024

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.

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Colleen Young, Connect Director | @colleenyoung | Mar 3 8:04pm
In reply to @rwells50 "@colleenyoung Yes you have that right. I started the first two years with scopes every three..." + (show)
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@colleenyoung
Yes you have that right. I started the first two years with scopes every three months. The last year they have been every 6 months, so about 10 over the 3 years. My next one is March 2nd.

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@rwells50, how did your scope go?

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rwells50 | @rwells50 | Mar 3 8:39pm
In reply to @colleenyoung "@rwells50, how did your scope go?" + (show)
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@rwells50, how did your scope go?

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@colleenyoung
It was clear. I have 3 more BCG treatments in late May and early June. Another scope in September and if it’s clear then I’m through with BCG treatments.

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Colleen Young, Connect Director | @colleenyoung | Mar 4 1:40pm
In reply to @sbassmeister "I have been dealing with prostate cancer since 2023. I had an RARP in 2023. The..." + (show)
Profile picture for sbassmeister @sbassmeister

I have been dealing with prostate cancer since 2023. I had an RARP in 2023. The cancer returned in 2024 and I had 39 radiation sessions. Two months after the end of radiation I began having blood in my urine. My Radiation Oncologist said that it was likely due to the radiation and we would keep an eye on it. That was June, 2025. Yesterday I had a cystoscopy and learned I now have bladder cancer. I go in for a biopsy in March. I'm wondering if this cancer is either related to the prostate cancer or if it was caused by the radiation.

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@sbassmeister, there are a few members who have both prostate cancer and bladder cancer. You may be wish to ask your questions here:
- Prostate cancer AND bladder cancer - any others with both?https://connect.mayoclinic.org/discussion/prostate-cancer-and-bladder-cancer-any-others-with-both/

All the best with the biopsy this month.

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ken17 | @ken17 | Mar 18 3:30pm

I’m an 85 year old man, in good general health with a T1 high grade urothelial tumor with possible plasmacytoid features. Not muscle invasive, and Dr Tyson gave me a choice of BCG or cystectomy. For me, since catheterization is painful and cystoscopy is more painful I chose cystectomy. It is more definitive, and I won’t need to be looking at an endless series of treatments and possible eventual cystectomy. Always interested in more info.

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sharonlsorrell1953s | @sharonlsorrell1953s | Mar 20 5:07pm

Like to know what people think of not doing chemo for bladder cancer an do you know what the life is without treatment. I have now a 10 cc in my bladder

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jguggia2 | @jguggia2 | 6 days ago

Had a radical cystectomy in June of 2023. since September of 2024 have has some bleeding from the urethra. The doctor felt a tumor and needs to do a biopsy. If cancer they need to take the remaining urethra. Anyone had this done? Thank you

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ken17 | @ken17 | 6 days ago

85 yo man, good health, have a T1 high grade urothelial malignancy, not muscle invasive. Had 2 TURBT, no chemo. Scheduled for open cystectomy with ileal conduit. Anyone with similar experiences?
Ken17

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Paul | @pol7 | 4 days ago
In reply to @delavan "@pol7 I was diagnosed with NMIBC in October 2024. I will be 77 this summer. I..." + (show)
Profile picture for delavan @delavan

@pol7 I was diagnosed with NMIBC in October 2024. I will be 77 this summer. I am in otherwise excellent health. My original physician wanted to take a wait and see approach, going in for a cystoscopy every three months. I wanted BCG. He didn’t prescribe it. After a recurrence three months later, and a TURBT, he still wouldn’t budge. I ha another recurrence and then had six weeks of Gem/ Doce. My next cystoscopy was clean. Three months later, I had another recurrence. Clean the next time around. I changed physicians after the six week treatment regimen. I am glad I did. I tolerate the Gem/Doce reasonably well. But I am tired for a day or so after. The literature suggests that Gem/Doce may be nearly as effective as BCG. If it fails for me, I will go on BCG. Good luck.

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@delavan
BCG didn't work for me. My Dr is talking about doing the Gen/Doce if needed after my next scope in April.

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Sue, Volunteer Mentor | @sepdvm | 2 days ago

My husband had a radical cystectomy/prostatectomy 4 years ago after a few years of treatments for highly aggressive urothelial cell carcinoma of the bladder, muscle invasive. He is happy with his neobladder and the new normal has him self cathing 4 times a day to empty completely. Incontinence is only an issue at night. I know how much against losing the bladder we were early in this battle, but aiming for a cure takes different pathways for each one of us. You do what feels right for you. New treatments are being approves all the time and saving the bladder is always the priority. Keep reading and researching and consider second opinions if your treatment options seem limited.

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sharonlsorrell1953s | @sharonlsorrell1953s | 1 day ago
In reply to @sharonlsorrell1953s "Like to know what people think of not doing chemo for bladder cancer an do you..." + (show)
Profile picture for sharonlsorrell1953s @sharonlsorrell1953s

Like to know what people think of not doing chemo for bladder cancer an do you know what the life is without treatment. I have now a 10 cc in my bladder

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@sharonlsorrell1953s
thank you

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