1. < Bladder Cancer
Moderator

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.

4hope | @4hope | 2 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

Hi there,
We were told by MSK that they didn’t have BCG back in November. Our local urologist had it though and my husband was able to start treatment. Through the nurse I heard they have another patient who had been traveling long distances (Allentown to Philadelphia)for BCG which was too difficult for him. He was able to be referred and get BCG at our local urologist as well. So maybe there might be urologists near you with BCG supply that aren’t at the major medical centers. It might take calling around or seeing a local urologist and asking for help locating BCG through their professional networks. Just a thought.

REPLY
scott232 | @scott232 | 1 day ago
In reply to @jowilliams1 "Yes, I have a port. I was glad to have it for chemo as it made..." + (show)
@jowilliams1

Yes, I have a port. I was glad to have it for chemo as it made things easier on me.

Chemo was difficult. The farther along, the harder it got. Nausea and overall fatigue were my biggest issues. So glad to have that behind me. I had surgery in Nov and now have a neobladder.

Jump to this post

How has your neo bladder recovery going. I’m interested in the outcome vs
Other options if and when I need to do it. Thank you

REPLY
1 reply
jowilliams1 | @jowilliams1 | 1 day ago
In reply to @scott232 "How has your neo bladder recovery going. I’m interested in the outcome vs Other options if..." + (show)
@scott232

How has your neo bladder recovery going. I’m interested in the outcome vs
Other options if and when I need to do it. Thank you

Jump to this post

I've been pleasantly surprised with my neobladder! My surgeon prepared me well mentally for the challenges that I could run into but thankfully things have gone as we hoped. Of course it will take a while for it to work perfectly but realizing that ahead of time was important. It takes patience but I'm pleased at where I'm at and tomorrow will only be 6 weeks since my surgery. I have not had any complications. Recovery the first three weeks is particularly difficult but it gets easier each day.

REPLY
View MoreView Less
Please sign in or register to post a reply.