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.

backroadsbarbie | @backroadsbarbie | 1 day ago

Hi
I’m here for support. My husband has the noninvasive high grade bladder cancer. He’s 53. We were totally blindsided by this diagnosis. Been dealing a little over a year with this. It’s totally changed and disrupted our lives. He’s had 5 surgeries, 6 BCG and a chemo after a surgery in September. It’s not slowing down. I’m stuck in an anger/grieving stage. It doesn’t help that I’m an RN and never get a break from sick or ailing people with various complaints all day. Any advice for him or me is welcome. I feel like I am losing control over this and have already lost my big strong husband as this has changed him so much. Prayers to all. Thank
You.

scott232 | @scott232 | 3 days ago

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

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

kre22 | @kre22 | 5 days ago

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

judilafleur | @judilafleur | 5 days ago

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

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.

judilafleur | @judilafleur | 5 days ago

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

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

jimg56 | @jimg56 | 5 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)

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.❤️❤️❤️

deb2024 | @deb2024 | 5 days ago

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

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.

ljashton | @ljashton | 5 days ago

With BCG there were. Perhaps he’s use to meds but he just has fatigue and some increased urgency the first few days after treatment. He doesn’t complain about burning.

jimg56 | @jimg56 | 5 days ago

In reply to @ljashton "Please ask about gem/doc combination treatment. It has been very effective for my husband. I would..." + (show)

Thank you so much. I really appreciate your advice. Good Luck to your husband.
I will ask about that instead of bcg. I did hear it is better. Are there many side- effects?

ljashton | @ljashton | 6 days ago

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

Please ask about gem/doc combination treatment. It has been very effective for my husband.
I would imagine if cancer is observed in December, they will do another TURBT. You SHOULD start treatment no more than a month after that. I looked up Sloan K and the website states that the combo therapy is something that is offered.
My husband started off
with two rounds (12) of BCG which didn’t work for him, but the chemo did.
The doctor will give you choices and one does need to advocate for self.
Hope all goes well.

View More View Less

Please sign in or register to post a reply.