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Bladder Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, May 17 3:57pm

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.

deb2024 | @deb2024 | 3 days ago
In reply to @jimg56 "Hello everyone, I have joined on behalf of my husband. He has non invasive carcinoma bladder..." + (show)
@jimg56

Hello everyone,
I have joined on behalf of my husband. He has non invasive carcinoma bladder cancer. He had a turbst in june and in sept the cancer was back. Drs have been slow with starting any treatments. He was suppose to start BCG treatments nov 14 but they do not have availability due to the WW shortage.
Next app is dec 3 @ sloan k. For cystocopy.
As of right now sloan does not have the bcg.
I am hopeful and will insist the alternate treatment i have read about on here is used.
Nice to meet all of you.
Catherine

Jump to this post

Catherine,
I’m also on the gem/doc treatment & entering 2nd year of monthly treatments. BCG didn’t work for me. So far the cancer hasn’t returned. I have some side effects but are manageable. As someone else stated you are your best advocate. I hope it goes well for your husband.

REPLY
1 reply
jimg56 | @jimg56 | 3 days ago
In reply to @deb2024 "Catherine, I’m also on the gem/doc treatment & entering 2nd year of monthly treatments. BCG didn’t..." + (show)
@deb2024

Catherine,
I’m also on the gem/doc treatment & entering 2nd year of monthly treatments. BCG didn’t work for me. So far the cancer hasn’t returned. I have some side effects but are manageable. As someone else stated you are your best advocate. I hope it goes well for your husband.

Jump to this post

Thank you for the information. I am very happy the cancer has not returned and sorry you have to go through this.
It seems like such a long road… 2 years
I guess we should be thankful there is treatment no matter how long the road.❤️❤️❤️

REPLY
judilafleur | @judilafleur | 3 days ago
In reply to @jimg56 "Hello everyone, I have joined on behalf of my husband. He has non invasive carcinoma bladder..." + (show)
@jimg56

Hello everyone,
I have joined on behalf of my husband. He has non invasive carcinoma bladder cancer. He had a turbst in june and in sept the cancer was back. Drs have been slow with starting any treatments. He was suppose to start BCG treatments nov 14 but they do not have availability due to the WW shortage.
Next app is dec 3 @ sloan k. For cystocopy.
As of right now sloan does not have the bcg.
I am hopeful and will insist the alternate treatment i have read about on here is used.
Nice to meet all of you.
Catherine

Jump to this post

I just got diagnosed with High Grade non invasive Bladder cancer any one else out there wanting to give advice from their experience?

REPLY
1 reply
judilafleur | @judilafleur | 3 days ago
In reply to @jimg56 "Hello everyone, I have joined on behalf of my husband. He has non invasive carcinoma bladder..." + (show)
@jimg56

Hello everyone,
I have joined on behalf of my husband. He has non invasive carcinoma bladder cancer. He had a turbst in june and in sept the cancer was back. Drs have been slow with starting any treatments. He was suppose to start BCG treatments nov 14 but they do not have availability due to the WW shortage.
Next app is dec 3 @ sloan k. For cystocopy.
As of right now sloan does not have the bcg.
I am hopeful and will insist the alternate treatment i have read about on here is used.
Nice to meet all of you.
Catherine

Jump to this post

What was the alternate?
What kind of side effects the medication have ?
I trying to learn as much as I can. I appreciate anyone's input.

REPLY
kre22 | @kre22 | 2 days ago

To: SWH
From: Kre22 -
Thanks for the "hug."

REPLY
scott232 | @scott232 | 1 day ago
In reply to @judilafleur "I just got diagnosed with High Grade non invasive Bladder cancer any one else out there..." + (show)
@judilafleur

I just got diagnosed with High Grade non invasive Bladder cancer any one else out there wanting to give advice from their experience?

Jump to this post

Hi. I was diagnosed with same. Had two turbt surgeries to remove tumor
Had 6 BCG immune therapy treatments. Cancer free in August. Just finishing 3bcg
maintenance treatments.
All started in April. Not a pleasant process but necessary and the standard. You need to have faith in your urologist. Cancer is highly reoccurring so you need to be consistent in checkups. Doable. Good luck

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