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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.

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talltxlady | @talltxlady | Nov 24 5:29pm
In reply to @lannak "@talltxlady So amazing!!! Congratulations!!! Obviously you were able to tolerate the BCG treatments for 3 years...." + (show)
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@talltxlady So amazing!!! Congratulations!!! Obviously you were able to tolerate the BCG treatments for 3 years. Did you have any side effects during the 3 years?

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@lannak absolutely, yes. Severe burning pain while holding the BCG for 2 hours, burning while urinating along with some blood sometimes 2 to 3 days after, along with fatigue and flu like symptoms and just general malaise. The burning got worse as treatments progressed. But we do what we need to do and I thank God it's working.

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lannak | @lannak | Nov 24 12:08pm
In reply to @talltxlady "Good morning @lannak. I recently had my cystoscopy which came back clean. Got my next semi-annual..." + (show)
Profile picture for talltxlady @talltxlady

Good morning @lannak. I recently had my cystoscopy which came back clean. Got my next semi-annual cysto scheduled for 6 months out. Doctor said if next cysto comes back good I will be at the 5 year mark at that point and can start doing annual cystoscopys instead of semi-annual. I also took 3 full years of BCG treatments.

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@talltxlady So amazing!!! Congratulations!!! Obviously you were able to tolerate the BCG treatments for 3 years. Did you have any side effects during the 3 years?

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talltxlady | @talltxlady | Nov 24 6:44am

Good morning @lannak. I recently had my cystoscopy which came back clean. Got my next semi-annual cysto scheduled for 6 months out. Doctor said if next cysto comes back good I will be at the 5 year mark at that point and can start doing annual cystoscopys instead of semi-annual. I also took 3 full years of BCG treatments.

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lannak | @lannak | Nov 23 9:23am
In reply to @talltxlady "Welcome @annabel55 so sorry you're having to go through all of this and the surgeries. I,..." + (show)
Profile picture for talltxlady @talltxlady

Welcome @annabel55 so sorry you're having to go through all of this and the surgeries.
I, too, was diagnosed with high grade NMI bladder cancer 4 years ago. Hopefully yours is not invading the muscle. Also, I didn't realize bladder cancer could be inherited. Besides the smoking for a year were you ever exposed to any chemicals of any sort? Just curious. I smoked for 33 years so there's no question as to where mine came from. By the Grace of God I managed to quit smoking 7.5 years ago. Three and 1/2 years into my quit was when I got my diagnosis, but I pushed through and never picked them back up again. Best of luck to you on everything.

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@talltxlady If I may ask what are you currently doing for treatment at 4 years out. I am 1 year post diagnosis. I’ve had 12 rounds of BCG and 3 TURBTs. My last 2 scopes were clear but I can’t handle the BCG. My doc said to hold the last round of BCG and I get an in office scope in January. I’m nervous about not being on anything for now.

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Colleen Young, Connect Director | @colleenyoung | Nov 22 2:46pm
In reply to @jr1466 "Hi. I’m a 53yo male and was diagnosed with T1 carcinoma in situ last month. I..." + (show)
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Hi. I’m a 53yo male and was diagnosed with T1 carcinoma in situ last month. I am being treated at Mayo in Rochester (about 6 hours from where I live) and so far have been very impressed with the care I’m receiving. It’s been worth every minute of the long drives.

I had a TURBT on Friday and will begin BCG in December. This is my first major health issue of any kind…I had never even spent a night in the hospital until last month.

Thank you to everyone for sharing their knowledge and experience in this group…it’s been helpful. I hope to do the same as I work through this.

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@jr1466, Welcome. How is the recovery from the TURBT going?

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jrappster | @jrappster | Nov 16 1:55pm
In reply to @jaxfl "TURBT is generally very safe. Unless there are other medical issues or allergies to anesthesia." + (show)
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TURBT is generally very safe. Unless there are other medical issues or allergies to anesthesia.

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@jaxfl Thanks for your response, appreciate the positive voice❤️

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Colleen Young, Connect Director | @colleenyoung | Nov 15 1:30pm
In reply to @keith0513 "@jaxfl Thanks for your reply. My next cystoscopy will be a blue light with TURBT if..." + (show)
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@jaxfl
Thanks for your reply. My next cystoscopy will be a blue light with TURBT if needed. I'm sure my Urologist is not a oncology urologist but very well trusted in his community.

In addition to all this, I have a 2nd opinion scheduled with Memorial Sloan Kettering on 11/13 to confirm the findings and possible treatment options. In my honest opinion, if I am assured that there is/are no cancer present I will move ahead with the Diverticulectomy. Depending on the 2nd opinion of course, Even though this is a second recurrence for me, it feels all very new to me.

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@keith0513, how did the appointment as MSK go? What did you find out?

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jaxfl | @jaxfl | Nov 14 8:41pm

TURBT is generally very safe. Unless there are other medical issues or allergies to anesthesia.

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jrappster | @jrappster | Nov 14 1:30pm

Hi my name is Jeff
I have a Transurethral resection of bladder tumor scheduled for December 5th
At this point not sure of type of cancer or safety of the procedure to remove the tumor

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