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Moderator

Bladder Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, May 17, 2024

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.

Profile picture for dldinsd
dldinsd | @dldinsd | Jul 8, 2024
In reply to @shester "I completely understand being overwhelmed with the news. No one in my family has ever had..." + (show)
Profile picture for Sheila @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?

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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.

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Robert Steen | @steenrl | Jul 4, 2024
In reply to @swh "Where are you able to get BCG locally? I am in east central SD and having..." + (show)
Profile picture for Sue @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.

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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.

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Sue | @swh | Jul 3, 2024

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.

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schew5515 | @schew5515 | Jul 2, 2024
In reply to @shester "Hello, all my procedures have been completed locally. I only discovered this forum while searching for..." + (show)
Profile picture for Sheila @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.

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Thank You needed to hear this today

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schew5515 | @schew5515 | Jul 2, 2024

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

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schew5515 | @schew5515 | Jul 2, 2024

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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 1, 2024
In reply to @schew5515 "My husband journey with started April 12th. We were with one Dr who was so rude..." + (show)
Profile picture for schew5515 @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.

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@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?

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Sheila | @shester | Jun 24, 2024
In reply to @dldinsd "I will not be having a 2nd TURBT. I start BCG on July 9th. This forum..." + (show)
Profile picture for dldinsd @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.

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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.

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1 reply
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jcold5619 | @jcold5619 | Jun 23, 2024
In reply to @sepdvm "Hello @jcold5619 My husband had the neobladder surgery at Mayo Clinic in 2021. It was fully..." + (show)
Profile picture for Sue, Volunteer Mentor @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?

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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

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Mentor
Sue, Volunteer Mentor | @sepdvm | Jun 23, 2024
In reply to @jcold5619 "I’m glad you are doing well. Kind of an off the wall question but thought I..." + (show)
Profile picture for jcold5619 @jcold5619

I’m glad you are doing well.

Kind of an off the wall question but thought I would throw it out there to see if anyone could answer.

Does Medicare cover the cost of a Neobladder procedure ?

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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?

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