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.

Hello. My husband was diagnosed with bladder cancer. He has been in constant pain for the past 2x weeks. His kidneys got infected now he has 2x catheter attached untill he gets chemotherapy.
I hope and pray the treatment will help ease his pains.

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@kre22

Thank you, very much for all you do in this support group
. My bladder cancer was discovered incidentally to a routine urology check up. The cancer was removed the following day without complication. I have had cystoscopies every six months and once a year a CT urogram. After 2 1/2 years there has been no reoccurrence; but, I have been told that there is a high rate of recurrence The cancer was a non-invasive low-grade, urothelial cancer. My next six month follow-up is in early December.
PC

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Congratulations on no recurrences. Hopefully the BCG treatments will eliminate mine.

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@scott232

Hi. Diagnosed high grade NIMBC last April. Two surgery’s and 6 BCG treatments so far. 3 scheduled in November. Cancer is gone for now but high rate of reoccurring. My treatment protocol is pretty much standard. Next look in bladder scheduled for Jan.

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Good luck in January!

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Hello.
My husband was diagnosed with bladder cancer.
Mass in the bladder.
We waiting to start chemotherapy.
He has 2x catheter connected from the kidneys.
So there a sticky substance released thru the penis.
I would like to know what can it be.

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First thanks for having this space. I was diagnosed with NIMBC after discovering blood in my urine about a year ago. I was diagnosed with Malignant neoplasm of bladder after I found blood in my urine. I’ve been in BCG immunotherapy with cystoscopy follow up. (My level of fear has moderated, but what can I say? It’s scary.)
Immunotherapy and cystoscopy visits are OK. It takes a couple of days before the pain from urinating subsidies. Anyway, I’m “happy” to be in maintenance mode.

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@blazermaniac

Hi all. I'm new to the group. I've had 2 surgeries within a year and now need a 3rd. This time there are only a couple of very small lesions. Mine is non muscle invasive but my doctor wants me to start BCG treatments. because of the high recurrence rate. I will be interested in reading your stories.

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@blazermaniac, I'd like to add my welcome. Using the group search function, I found this discussions related to Bacillus Calmette-Guerin (BCG) treatment where members are sharing their experiences:

- My journey with Bacillus Calmette-Guerin (BCG) treatment
https://connect.mayoclinic.org/discussion/first-bcg-treatment/
- BCG For Bladder Cancer: Anyone got experience to share?
https://connect.mayoclinic.org/discussion/bcg-for-bladder-cancer/
See all here: https://connect.mayoclinic.org/group/bladder-cancer/?search=BCG&index=discussions

Will you have the third surgery before starting BCG? How are you doing?

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@colleenyoung

@blazermaniac, I'd like to add my welcome. Using the group search function, I found this discussions related to Bacillus Calmette-Guerin (BCG) treatment where members are sharing their experiences:

- My journey with Bacillus Calmette-Guerin (BCG) treatment
https://connect.mayoclinic.org/discussion/first-bcg-treatment/
- BCG For Bladder Cancer: Anyone got experience to share?
https://connect.mayoclinic.org/discussion/bcg-for-bladder-cancer/
See all here: https://connect.mayoclinic.org/group/bladder-cancer/?search=BCG&index=discussions

Will you have the third surgery before starting BCG? How are you doing?

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Yes, my doctor plans to remove the 2 small lesions and then six weeks later I begin BCG.

Thanks for the feedback @colleenyoung

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@trft

I’m new here. I’m here because I have bladder cancer and I’m in maintenance mode. Except for the fact that I’ve got bladder cancer my treatment for the last year has been so far so good. Mainly I got used to it.

I look forward to finding out more from this group.

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Welcome, @trft. You mention that you are in maintenance mode. Are you on maintenance treatment? What treatment? May I ask what type of bladder cancer you have?

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@kre22

Thank you, very much for all you do in this support group
. My bladder cancer was discovered incidentally to a routine urology check up. The cancer was removed the following day without complication. I have had cystoscopies every six months and once a year a CT urogram. After 2 1/2 years there has been no reoccurrence; but, I have been told that there is a high rate of recurrence The cancer was a non-invasive low-grade, urothelial cancer. My next six month follow-up is in early December.
PC

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Welcome, @kre22. I think whether a cancer has a known high-rate of recurrence or not, the though of cancer coming back lurks in one's mind, always - sometimes in the background, sometimes more pronounced.

Do you find that you start to have to cope with "scanxiety" as your six month follow-up approaches? Do you have ways to cope, distract, accept?

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