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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 jowilliams1
jowilliams1 | @jowilliams1 | May 10 7:28pm
In reply to @spotdog "@jowilliams1 Thank you for your reply. I have seen a PT for my pelvic floor as..." + (show)
Profile picture for spotdog @spotdog

@jowilliams1
Thank you for your reply. I have seen a PT for my pelvic floor as a part of the treatments I have been receiving. She performed all sorts of tests and determined that I have no problem at all with my pelvic floor, despite my having had my prostate removed many years ago. I'm really trying to find anyone who has had an ileal conduit procedure and identify any problems, aftereffects, etc.

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@spotdog
Good luck. I hope you can find some answers.

REPLY
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spotdog | @spotdog | May 10 4:47pm
In reply to @sepdvm "@spotdog I can only imagine how tired you are dealing with this. It is great to..." + (show)
Profile picture for Sue, Volunteer Mentor @sepdvm

@spotdog I can only imagine how tired you are dealing with this. It is great to be cancer free but you have issues that are very hard to live with. I am assuming that you have tried various antispasmodic medications for the urgency issue with no improvement. My husband ended up with a neobladder surgery to remove bladder due to continuous recurrence of tumors. While he must self catheterize 3-4 times a day, he is satisfied with the outcome and has only minimal incontinence at night. It was a massive surgery with complications. He just did not want an ostomy.
You have seen this ileal conduit surgeon, but have you had an opinion from a referral to a large referral center/teaching hospital/cancer center to determine that there are really no other options than cystectomy to relieve your symptoms? Are your symptoms all secondary to the initial surgery or due in part to any of the followup treatments? A good question for your medical team or a referral doctor.

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@sepdvm
Thanks for your response. The treatment team I have assisting me has cussed and discussed everything that they believe could be applicable to my issues. My problems are all post operative/secondary to my bladder surgery. We believe they are the result of the totally messed up condition of my bladder as a result of treatment and the prior radiation I received. I also believe that the amounts of "catheter in-catheter out" treatments I have received have damaged my urethra and caused/contribute to the problems I have. I have spoken with another experienced urologist to get a second opinion and have discussed everything with the surgeon that specializes in both ileal conduit and neo-bladder procedures.

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spotdog | @spotdog | May 10 4:38pm
In reply to @jowilliams1 "@spotdog I'm so sorry to hear you're dealing with this stress. It must be exhausting. Have..." + (show)
Profile picture for jowilliams1 @jowilliams1

@spotdog
I'm so sorry to hear you're dealing with this stress. It must be exhausting. Have you sought out a pelvic floor physical therapist? I have a neobladder after MIBC in 2024 and in my situation pelvic floor exercises were extremely helpful. I'm wondering if that might help.

Jump to this post

@jowilliams1
Thank you for your reply. I have seen a PT for my pelvic floor as a part of the treatments I have been receiving. She performed all sorts of tests and determined that I have no problem at all with my pelvic floor, despite my having had my prostate removed many years ago. I'm really trying to find anyone who has had an ileal conduit procedure and identify any problems, aftereffects, etc.

REPLY
1 reply
Profile picture for spotdog
spotdog | @spotdog | May 10 4:35pm
In reply to @jowilliams1 "@spotdog I'm so sorry to hear you're dealing with this stress. It must be exhausting. Have..." + (show)
Profile picture for jowilliams1 @jowilliams1

@spotdog
I'm so sorry to hear you're dealing with this stress. It must be exhausting. Have you sought out a pelvic floor physical therapist? I have a neobladder after MIBC in 2024 and in my situation pelvic floor exercises were extremely helpful. I'm wondering if that might help.

Jump to this post

@jowilliams1

REPLY
Profile picture for jowilliams1
jowilliams1 | @jowilliams1 | May 10 7:57am
In reply to @spotdog "Hi, I'm 79 years old, living in Georgetown, Texas. I was diagnosed with bladder cancer around..." + (show)
Profile picture for spotdog @spotdog

Hi, I'm 79 years old, living in Georgetown, Texas. I was diagnosed with bladder cancer around 11/2024. I had 3 tumors that were high risk but non-muscle invasive. They were cut out and my urology group put me into a 24 month FDA trial treatment program. I've had a bunch of BCG treatments (2 remaining) as well as a year of immuno-therapy drip. While all my cryoscopies have been negative my problem has been that (1) I am totally incontinent and, (2) have to urinate about every couple of minutes (24/7) ever since they operated on me in 12/2024. As a result, I have not been able to sleep at night for around 18 months. My treatment doctor does not give me a lot of hope that I will outgrow the incontinence/constant urination once my treatment program is over. Thus, I have met with a surgeon that specializes in ileal conduit surgery and am considering this surgical option. While I recognize that having to wear the pouch would bring its own problems, I'm really ready to end my totally intrusive incontinence. Has anyone recently faced a similar problem?? I'm looking for advice and input.

Jump to this post

@spotdog
I'm so sorry to hear you're dealing with this stress. It must be exhausting. Have you sought out a pelvic floor physical therapist? I have a neobladder after MIBC in 2024 and in my situation pelvic floor exercises were extremely helpful. I'm wondering if that might help.

REPLY
2 replies
Profile picture for Sue, Volunteer Mentor
Mentor
Sue, Volunteer Mentor | @sepdvm | May 9 10:03am
In reply to @spotdog "Hi, I'm 79 years old, living in Georgetown, Texas. I was diagnosed with bladder cancer around..." + (show)
Profile picture for spotdog @spotdog

Hi, I'm 79 years old, living in Georgetown, Texas. I was diagnosed with bladder cancer around 11/2024. I had 3 tumors that were high risk but non-muscle invasive. They were cut out and my urology group put me into a 24 month FDA trial treatment program. I've had a bunch of BCG treatments (2 remaining) as well as a year of immuno-therapy drip. While all my cryoscopies have been negative my problem has been that (1) I am totally incontinent and, (2) have to urinate about every couple of minutes (24/7) ever since they operated on me in 12/2024. As a result, I have not been able to sleep at night for around 18 months. My treatment doctor does not give me a lot of hope that I will outgrow the incontinence/constant urination once my treatment program is over. Thus, I have met with a surgeon that specializes in ileal conduit surgery and am considering this surgical option. While I recognize that having to wear the pouch would bring its own problems, I'm really ready to end my totally intrusive incontinence. Has anyone recently faced a similar problem?? I'm looking for advice and input.

Jump to this post

@spotdog I can only imagine how tired you are dealing with this. It is great to be cancer free but you have issues that are very hard to live with. I am assuming that you have tried various antispasmodic medications for the urgency issue with no improvement. My husband ended up with a neobladder surgery to remove bladder due to continuous recurrence of tumors. While he must self catheterize 3-4 times a day, he is satisfied with the outcome and has only minimal incontinence at night. It was a massive surgery with complications. He just did not want an ostomy.
You have seen this ileal conduit surgeon, but have you had an opinion from a referral to a large referral center/teaching hospital/cancer center to determine that there are really no other options than cystectomy to relieve your symptoms? Are your symptoms all secondary to the initial surgery or due in part to any of the followup treatments? A good question for your medical team or a referral doctor.

REPLY
1 reply
Profile picture for talltxlady
talltxlady | @talltxlady | May 7 6:11pm
In reply to @deidre77 "@talltxlady I wish you good luck and success with your scope. I hope all is well...." + (show)
Profile picture for Bobbie @deidre77

@talltxlady
I wish you good luck and success with your scope.

I hope all is well.

Best wishes.

Jump to this post

@deidre77 Thank you so much! I really appreciate your nice comment.

REPLY
Profile picture for Bobbie
Bobbie | @deidre77 | May 7 5:54pm
In reply to @talltxlady "Still no cystoscopy! My doctors office called and canceled my appointment. Said the doctor had an..." + (show)
Profile picture for talltxlady @talltxlady

Still no cystoscopy! My doctors office called and canceled my appointment. Said the doctor had an emergency and couldn't be there this afternoon. I'm supposed to be rescheduled for 1 week from today. I will give you all an update then. Peace Love and Prayers

Jump to this post

@talltxlady
I wish you good luck and success with your scope.

I hope all is well.

Best wishes.

REPLY
1 reply
Profile picture for talltxlady
talltxlady | @talltxlady | May 7 4:46pm

Still no cystoscopy! My doctors office called and canceled my appointment. Said the doctor had an emergency and couldn't be there this afternoon. I'm supposed to be rescheduled for 1 week from today. I will give you all an update then. Peace Love and Prayers

REPLY
1 reply
Profile picture for winmic
winmic | @winmic | May 7 3:45pm

I am Mike, after a cystoscopy turbt for a stage 3 invasive bladder wall tumour in September 2024 a course of chemo followed. August 25 had another tumour removed followed by a course of 20 doses of radio therapy. January 26 a further cystoscopy revealed a small tumour non invasive .Now on a BCG course started April.

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