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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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mrtony | @mrtony | Jan 15 2:31pm
In reply to @delavan "It appears that you will be traveling down the road of a TURBT (transurethral resection of..." + (show)
Profile picture for delavan @delavan

It appears that you will be traveling down the road of a TURBT (transurethral resection of a bladder tumor). It is an out-patient procedure. I had my first TURBT in October. I had a cystoscopy on Wednesday that disclosed two new tumors. I had a TURBT to resect them yesterday. Not a lot of post operative pain. Some discomfort from the Foley Catheter, which will be removed Monday. Don’t hesitate to have the tumor excised. Move with all reasonable haste. Good luck!

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I had the camera thing today, I have the TURBT tomorrow.

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delavan | @delavan | Jan 11 11:22am

Thanks. I remain optimistic.

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delavan | @delavan | Jan 11 10:00am
In reply to @colleenyoung "@delavan, how did the cystoscopy go? What is the next step in your treatment plan?" + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@delavan, how did the cystoscopy go? What is the next step in your treatment plan?

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Two new papillary tumors on the prostate. Not invasive. Tumors resected and affected area fulgurated yesterday. Doctor explained no prior BCG because of “worldwide shortage.” I now qualify for some form of post operative therapy. To be discussed a meeting with physician. I was hoping to qualify for adstiladrin. But a condition precedent to receiving it is a demonstration to receiving it is a demonstration that BCG is not effective. I hope I am not in a Catch 22 situation.

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delavan | @delavan | Jan 11 9:43am
In reply to @mrtony "I just got my ct scan back, it shows a mass in the bladder 2.9 cm...." + (show)
Profile picture for mrtony @mrtony

I just got my ct scan back, it shows a mass in the bladder 2.9 cm. I have been peeing blood and blood clots for a few weeks.

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It appears that you will be traveling down the road of a TURBT (transurethral resection of a bladder tumor). It is an out-patient procedure. I had my first TURBT in October. I had a cystoscopy on Wednesday that disclosed two new tumors. I had a TURBT to resect them yesterday. Not a lot of post operative pain. Some discomfort from the Foley Catheter, which will be removed Monday. Don’t hesitate to have the tumor excised. Move with all reasonable haste. Good luck!

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1 reply
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mrtony | @mrtony | Jan 10 5:01pm

I just got my ct scan back, it shows a mass in the bladder 2.9 cm. I have been peeing blood and blood clots for a few weeks.

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1 reply
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Colleen Young, Connect Director | @colleenyoung | Jan 9 8:23pm
In reply to @delavan "My name is Delavan. I was diagnosed with stage Ta bladder cancer in mid-October. I had..." + (show)
Profile picture for delavan @delavan

My name is Delavan. I was diagnosed with stage Ta bladder cancer in mid-October. I had a TURBT performed at that time. No complications. I am going in for a cystoscopy next week. It is being done at Northwestern Memorial in Chicago. The urologist is highly qualified, experienced and did a fellowship at John’s Hopkins. Much to my surprise he ordered no intravesical therapy, NOT even the standard BCG. I don’t want to lose my bladder. I understand that Adstiladrin provides tremendous results. Has anyone had it? Did Medicare pay for it?

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@delavan, how did the cystoscopy go? What is the next step in your treatment plan?

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delavan | @delavan | Jan 5 9:50am
In reply to @swh "BCG is in short supply so is being reserved for higher grade cancer. I had HT1..." + (show)
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BCG is in short supply so is being reserved for higher grade cancer. I had HT1 & received the 6 week induction BCG but no maintenance BCG availability. Instead cysto every 3 months. Amazing that a $250B company like Merck has supply issues.

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Thanks very much. Cystoscopy on Wednesday. I will ask a doctor at that time.

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Sue | @swh | Jan 4 9:02am
In reply to @delavan "My name is Delavan. I was diagnosed with stage Ta bladder cancer in mid-October. I had..." + (show)
Profile picture for delavan @delavan

My name is Delavan. I was diagnosed with stage Ta bladder cancer in mid-October. I had a TURBT performed at that time. No complications. I am going in for a cystoscopy next week. It is being done at Northwestern Memorial in Chicago. The urologist is highly qualified, experienced and did a fellowship at John’s Hopkins. Much to my surprise he ordered no intravesical therapy, NOT even the standard BCG. I don’t want to lose my bladder. I understand that Adstiladrin provides tremendous results. Has anyone had it? Did Medicare pay for it?

Jump to this post

BCG is in short supply so is being reserved for higher grade cancer. I had HT1 & received the 6 week induction BCG but no maintenance BCG availability. Instead cysto every 3 months. Amazing that a $250B company like Merck has supply issues.

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1 reply
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johns92118 | @johns92118 | Jan 3 9:08am
In reply to @colleenyoung "@barbara1, just checking in. Sorry to hear about the diagnosis, but hopefully you are now on..." + (show)
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@barbara1, just checking in. Sorry to hear about the diagnosis, but hopefully you are now on the path to getting treatment. How are you doing? Have you got appointments lined up?

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yes i have an appointment in early feb. i do get skittish just before, appointment at va next week, maye they can help with that

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Colleen Young, Connect Director | @colleenyoung | Jan 2 8:56pm
In reply to @barbara1 "Diagnosed (finally) with invasive, high grade papillary urothelial carcinoma. After Cystoscopy and TURBT urologist suggested cystectomy..." + (show)
Profile picture for Barbara @barbara1

Diagnosed (finally) with invasive, high grade papillary urothelial carcinoma. After Cystoscopy and TURBT urologist suggested cystectomy soon. That’s when I quickly began pursuing care and treatment at Mayo Clinic. Waiting now for triage consult. I have all the symptoms and pretty high level of discomfort, ie. pain. Quite rundown. I’m hoping to get my appointment moved up and get going on a plan. Have seen multiple providers over past months and months who all wanted to believe I either had uti, interstitial cystitis or just low estrogen. Very frustrating and dangerous.

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@barbara1, just checking in. Sorry to hear about the diagnosis, but hopefully you are now on the path to getting treatment. How are you doing? Have you got appointments lined up?

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