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.

scott232 | @scott232 | Jul 11 4:43pm

Did my 1st BCG treatment yesterday. Not terrible as I thought. Day 2 has been uneventful but feel maybe a little tired. Another step in the journey that I understand. 5 more coming in next weeks

REPLY
2 replies
dldinsd | @dldinsd | Jul 8 4:00pm
In reply to @shester "I completely understand being overwhelmed with the news. No one in my family has ever had..." + (show)
@shester

I completely understand being overwhelmed with the news. No one in my family has ever had bladder cancer either.
I did not seek a second opinion, first because I just went with what was suggested because I was scared and second because from everything I read my urologist was offering the recommended treatment.
I've had 2 TURBT procedures and today I will have my 5th BCG treatment at my urologists office. I cannot say enough good things about the care I've received and I trust I am in good hands.
Ask questions, like I didn't LOL. Will you have a 2nd TURBT before BCG?

Jump to this post

Hope you're doing well and done with your 6th treatment by now. I have a question please. I was notified on Saturday that there is a world shortage of BCG and wonder if you got the full or partial BCG in your latest treatment.
I am scheduled for my first treatment tomorrow and I'm upset that no one has called to tell me if I will get the full treatment. If only partial, would I have to have more than 6 treatments. I am in San Diego, CA. Thanks for any help.

REPLY
Robert Steen | @steenrl | Jul 4 9:03am
In reply to @swh "Where are you able to get BCG locally? I am in east central SD and having..." + (show)
@swh

Where are you able to get BCG locally? I am in east central SD and having trouble finding BCG locally to avoid the long drive to Mayo each week.

Jump to this post

I could not get BCG here in Tucson, AZ. However, the Mayo clinic seems to have a reliable supply up in Pheonix and I was able to get it there. I would check out Mayo in Minnesota.

REPLY
Sue | @swh | Jul 3 10:35am

Where are you able to get BCG locally? I am in east central SD and having trouble finding BCG locally to avoid the long drive to Mayo each week.

REPLY
1 reply
schew5515 | @schew5515 | Jul 2 9:31am
In reply to @shester "Hello, all my procedures have been completed locally. I only discovered this forum while searching for..." + (show)
@shester

Hello, all my procedures have been completed locally. I only discovered this forum while searching for information about BCG treatments.
I wish you well with your upcoming treatments. I'll tell you what the nurse told me during my initial treatment, she said, "This is not going to be like anything you have been imagining. It will be much easier!" And she was 100% correct.

Jump to this post

Thank You needed to hear this today

REPLY
schew5515 | @schew5515 | Jul 2 9:30am

We have an a filliw up to learn more on July 19th. We know it is now high grade one section.

REPLY
schew5515 | @schew5515 | Jul 2 12:37am

I have concerns. My husband is complaining of a
persistent back ache. Unusual order in urine. I'm not sure how much to push. We have an appointmentv uly 19. I think it's too far away.

What if so something is happening.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 1 11:56am
In reply to @schew5515 "My husband journey with started April 12th. We were with one Dr who was so rude..." + (show)
@schew5515

My husband journey with started April 12th. We were with one Dr who was so rude and direspectful after initially hearing this. Glad we got into Mayo June 7th had second turbt.
Yesterday we learned it is not low grade as previous thought but high grade. My husband appetite has plummeted he seems more tired we have not even started treatment. I'm worried.

They also said he results where unusual not sure what to think of this. Not in the muscle but present. We will have an appointment soon. The initial stage was T1. Now I'm not sure.

Jump to this post

@schew5515, you're in good hands at Mayo Clinic. I wanted to check in and see how you and your husband are doing. Did you learn more about his staging in the meantime? What is the treatment plan?

REPLY
Sheila | @shester | Jun 24 2:25pm
In reply to @dldinsd "I will not be having a 2nd TURBT. I start BCG on July 9th. This forum..." + (show)
@dldinsd

I will not be having a 2nd TURBT. I start BCG on July 9th. This forum has been very helpful. @shester - are you doing all your procedures locally or are you at a Mayo facility? Wondering if local doctors recommend Mayo or you just proceed on your own. Thanks for your reply. Every one helps.

Jump to this post

Hello, all my procedures have been completed locally. I only discovered this forum while searching for information about BCG treatments.
I wish you well with your upcoming treatments. I'll tell you what the nurse told me during my initial treatment, she said, "This is not going to be like anything you have been imagining. It will be much easier!" And she was 100% correct.

REPLY
1 reply
jcold5619 | @jcold5619 | Jun 23 4:44pm
In reply to @sepdvm "Hello @jcold5619 My husband had the neobladder surgery at Mayo Clinic in 2021. It was fully..." + (show)
@sepdvm

Hello @jcold5619
My husband had the neobladder surgery at Mayo Clinic in 2021. It was fully covered by Medicare and our secondary insurance Med Mutual at that time. Most of the coverage was Medicare. He has had several complications from immediately after surgery until last spring, but is still glad that he chose this surgery and does not deal with a stoma. Others have had better luck with their surgery ,but it is still a huge undertaking and a rough week in the hospital postop. Do you have surgery scheduled?

Jump to this post

Thank you very much for taking the time to reply and for the information that you provided.

I do not have any type of surgery currently scheduled. I just had a recent cystoscopy and thankfully there was no regrowth or new cancer found.

Unsure what lies ahead but I’m just trying to educate myself.

Good luck to both you and your husband. You sound like you have a wonderful attitude.

Jim

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