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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.

Profile picture for dianeoh26
dianeoh26 | @dianeoh26 | May 30 9:31am

Diagnosed with NIMBC.
I had one recurrence of non-invasive bladder cancer within three months of a clean cystoscopy. Could anyone tell me how often this type of cancer returns?

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1 reply
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vlewis | @vlewis | May 31 10:09am
In reply to @vlewis "My husband had Muscle Invasive Badder Cancer. He had immunotherapy, chemo and radiation. He has been..." + (show)
Profile picture for vlewis @vlewis

My husband had Muscle Invasive Badder Cancer. He had immunotherapy, chemo and radiation. He has been a year out cancer free, However. He has constant burning to urinate, and even when he isn't urinating. He urinates 14- 20 times a night. at least it is better than when he was going 45 times a night. or every 5 minutes. He has tried all kinds of meds to help with this.

Has anyone else had this problem and found a way to relieve the constant burning pain?

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@vlewis - I have read all that everyone is going through or has gone through, I can really understand, and feel for you... But I didn't see anyone having the issue of the constant burning after the radiation treatment on the bladder. It has been a year and a half since his last radiation treatment. Does anyone have or had this issue? If so did you find anything that helped? Because everything that has been prescribed to him so far has not worked.

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Sue, Volunteer Mentor | @sepdvm | Jun 1 9:04am
In reply to @vlewis "My husband had Muscle Invasive Badder Cancer. He had immunotherapy, chemo and radiation. He has been..." + (show)
Profile picture for vlewis @vlewis

My husband had Muscle Invasive Badder Cancer. He had immunotherapy, chemo and radiation. He has been a year out cancer free, However. He has constant burning to urinate, and even when he isn't urinating. He urinates 14- 20 times a night. at least it is better than when he was going 45 times a night. or every 5 minutes. He has tried all kinds of meds to help with this.

Has anyone else had this problem and found a way to relieve the constant burning pain?

Jump to this post

@vlewis that sounds terrible to be ongoing for so long. My husband didn't have radiation for his bladder cancer but never had burning like that with chemo. He ended up with a radical cystectomy and neobladder due to recurrences but is cancer free curently.
What do his doctors say about this prolonged symptom? I know from my experience with head and neck radiation that it takes a LONG time to heal the burns and damage. But after 70 Gy of radiation, my mouth and skin were healed and not painful by 6 months after it ended.
Have you considered a referral to a large cancer center or teaching hospital that specializes in Urologic cancer? I hope more patients chime in here with their solutions.

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Mentor
Sue, Volunteer Mentor | @sepdvm | Jun 1 9:21am
In reply to @dianeoh26 "Diagnosed with NIMBC. I had one recurrence of non-invasive bladder cancer within three months of a..." + (show)
Profile picture for dianeoh26 @dianeoh26

Diagnosed with NIMBC.
I had one recurrence of non-invasive bladder cancer within three months of a clean cystoscopy. Could anyone tell me how often this type of cancer returns?

Jump to this post

@dianeoh26 I see that the blood cancer post was likely a spell check correction.
My husband had a muscle invasive highly aggressive bladder cancer and with cystoscopy every 3-4 months following initial treatment he had regular recurrences. Mayo Urologists said that was expected with his cancer, hence the frequent scoping. I know of patients who continue for many years treating their noninvasive bladder cancer with TURBTS over and over. My husband tired of this after a few years and elected a radical cystectomy with neobladder for a cure. Despite many complications, he is cancer free and happy with his decision.
What treatments have you had for your bladder cancer?

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Moderator
Colleen Young, Connect Director | @colleenyoung | 4 days ago
In reply to @lititaly "Hi, bladder cancer stage 4 . I guess I will starting chemo next week. This is..." + (show)
Profile picture for lititaly @lititaly

Hi, bladder cancer stage 4 . I guess I will starting chemo next week. This is so overwhelming.. no symptom’s just found a lump bam cancer throughout my whole body is it worth the chemo.

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@lititaly, it is overwhelming to say the least. How is chemo going? How are you doing?

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