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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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Colleen Young, Connect Director | @colleenyoung | Feb 20 7:34pm
In reply to @rwells50 "I was diagnosed with high grade non-invasive bladder cancer in June of 2022. Within a week..." + (show)
Profile picture for rwells50 @rwells50

I was diagnosed with high grade non-invasive bladder cancer in June of 2022. Within a week I had surgery to remove the tumor. Two or three months later I had another surgery to remove lingering cancel cells. I started my BCG treatments in November of 2022. In February of 2023 my first scope after my first series of BCG treatments revealed the need for a third surgery to remove small lingering cancer cells. I’ve continued scopes and treatments since then with no additional cancer. My next scope is scheduled for March 16th.

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@rwells50, welcome. If I've interpreted your timeline correctly, you've been NED (no evidence of disease) since 2023. Do I have that right? How often have you had scopes over the 3 years?

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sbassmeister | @sbassmeister | Feb 19 4:12pm

I have been dealing with prostate cancer since 2023. I had an RARP in 2023. The cancer returned in 2024 and I had 39 radiation sessions. Two months after the end of radiation I began having blood in my urine. My Radiation Oncologist said that it was likely due to the radiation and we would keep an eye on it. That was June, 2025. Yesterday I had a cystoscopy and learned I now have bladder cancer. I go in for a biopsy in March. I'm wondering if this cancer is either related to the prostate cancer or if it was caused by the radiation.

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Colleen Young, Connect Director | @colleenyoung | Feb 17 1:58pm
In reply to @grifftg07 "I've finished my 6 treatments and now on 1st maintenance treatment next week. Check up yesterday..." + (show)
Profile picture for grifftg07 @grifftg07

I've finished my 6 treatments and now on 1st maintenance treatment next week. Check up yesterday told the doctor that my left ureter is still swollen so now they want to watch my kidney function. I'm not sure if I should worry about it or wait and see.

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@grifftg07, treatment can be tough on the kidneys. I'm glad your team is monitoring their function. What is your follow-up program/testing? How are you doing?

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rwells50 | @rwells50 | Feb 7 12:41pm

I was diagnosed with high grade non-invasive bladder cancer in June of 2022. Within a week I had surgery to remove the tumor. Two or three months later I had another surgery to remove lingering cancel cells. I started my BCG treatments in November of 2022. In February of 2023 my first scope after my first series of BCG treatments revealed the need for a third surgery to remove small lingering cancer cells. I’ve continued scopes and treatments since then with no additional cancer. My next scope is scheduled for March 16th.

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Colleen Young, Connect Director | @colleenyoung | Feb 6 5:22pm
In reply to @raybnyc "@colleenyoung Colleen and other members, The second pathology showed extensive lamina propria invasion with focal abutment..." + (show)
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@colleenyoung Colleen and other members, The second pathology showed extensive lamina propria invasion with focal abutment of the muscularis propria; definitive muscle invasion couldn’t be ruled out. Imaging (MRI pelvis, CT chest/abdomen) shows no spread. Given tumor volume, depth, and staging uncertainty, my team is treating this as early muscle-invasive disease and recommending neoadjuvant cisplatin-based chemotherapy (guided by Univ Miami /Sylvester GU Medical Oncology) followed by radical cystectomy at a high-volume center, with curative intent (performed at Cleveland Clinic FL). I’d appreciate hearing from others who faced a similar T1 vs early T2 gray-zone decision.

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@raybnyc, sounds like your team is very thorough. To find discussions relevant to your situation, I suggest using the Bladder Cancer group search.
For example, here are search results for the search term T1: https://connect.mayoclinic.org/group/bladder-cancer/

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grifftg07 | @grifftg07 | Feb 4 6:11am

I've finished my 6 treatments and now on 1st maintenance treatment next week. Check up yesterday told the doctor that my left ureter is still swollen so now they want to watch my kidney function. I'm not sure if I should worry about it or wait and see.

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delavan | @delavan | Feb 3 8:41pm
In reply to @pol7 "Hello all, I'm new to the group. I'm a 78 year old male in Virginia. My..." + (show)
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Hello all, I'm new to the group. I'm a 78 year old male in Virginia. My first bladder cancer discovery was in 2017. It was high grade, aggressive, non invasive. I had BCG treatment after the TURBT and was clear for almost a year, when it returned. Same thing, same treatment. Since then, I have had 3 more TURBTs for low grade, non invasive tumors, and I lost my right kidney to cancer in April 2024. I have since been cancer free until now. This past Tuesday I had TURBT for a large, low grade tumor, but this time it had penetrated into the middle lining... but not into the muscle lining. Dr was surprised at it's size because I was clean when he did the last scope 6 months ago. He is now giving me 2 options.
(1) Scope me again in 3 months to see if I'm clear. If so, continue scoping every 3 months rather then 6.
(2) Start treatment of Gem/Doce because BCG doesn't seem to work for me, and scope me for continued observation.

I would be interested to hear from anyone who has had similar conditions and treatments, especially the chemo treatment that I seem to now be facing.
Thank you!
pol7

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@pol7 I was diagnosed with NMIBC in October 2024. I will be 77 this summer. I am in otherwise excellent health. My original physician wanted to take a wait and see approach, going in for a cystoscopy every three months. I wanted BCG. He didn’t prescribe it. After a recurrence three months later, and a TURBT, he still wouldn’t budge. I ha another recurrence and then had six weeks of Gem/ Doce. My next cystoscopy was clean. Three months later, I had another recurrence. Clean the next time around. I changed physicians after the six week treatment regimen. I am glad I did. I tolerate the Gem/Doce reasonably well. But I am tired for a day or so after. The literature suggests that Gem/Doce may be nearly as effective as BCG. If it fails for me, I will go on BCG. Good luck.

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h2onsun | @h2onsun | Feb 1 1:07pm
In reply to @pol7 "@judyhigbee I'm 78 years old and I've been dealing with bladder cancer since 2017 and have..." + (show)
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@judyhigbee
I'm 78 years old and I've been dealing with bladder cancer since 2017 and have had several tumors removed over the years. In 2024 my annual scan found a tumor in my right kidney and 3 in the ureter. The kidney, ureter, and a small section of my bladder were removed. You can live with only one kidney. Good luck with your situation. 🙏🏻

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@pol7 hi, they found a 3cm tumor on my left kidney in an are hard to reach through urethra. I had no symptoms at all. They watched it for 6 years without symptoms. It got to 5 cm and Dr decided to remove kidney as it was confined to my kidney and couldn’t be removed and save the kidney. That was 2 years ago. I have no limitations. Have gotten some urothelial cancer cell on bladder wall. All have been removed and started bcg treatments. You do what you have to do to beat. Everyone is different their bodies react differently. God bless. Harry

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michzn | @michzn | Feb 1 9:23am
In reply to @janine1991 "Hi everyone, Thanks for all your stories and advice. Urologist has changed Antibiotic to Amoxicillin 500mg..." + (show)
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Hi everyone,
Thanks for all your stories and advice. Urologist has changed Antibiotic to Amoxicillin 500mg TDS for 10 days. (Plus a repeat for another 10 days if still have S&S of UTI) Not to worry about checking for infection (MSU) whilst on antibiotic and back to Oncologist to see if happy to have BCG whilst on antibiotics. I did query about the efficacy of BCG whilst on antibiotics, as I know it reduces the treatment success. He said it won’t make a difference. (Yes sure??) Interesting he said my UTI was hospital acquired. They used NaCl to clean area prior to catheterisation & not Chlorhexidine 1%. I am to insist on them using chlorhexidine from now on. So frustrated with all the blunders so far with private hospital. I am tempted to get on top of this UTI before restating BCG induction., but may take weeks. Worried at the speed high grade CIC has spread in 3 months. Developed 2 more areas from Aug to Nov on Cystoscopy. It’s now January…Urologist also said he was not keen on Radical Cystectomy after all my pelvic radiation in 2024…high risk & potential for complications & poor quality of life post surgery.

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@janine1991 Thank you for sharing about the difference in catherization products. I have noted them for my up coming surgery on 2/2. I am so sorry you are dealing with blunders, it’s just so awful. Sending you strength.

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Paul | @pol7 | Jan 31 12:21am
In reply to @judyhigbee "Laparoscopy surgery Oct25 to remove 6cm tumor on the outside of my upper ureter near calyx..." + (show)
Profile picture for judyhigbee @judyhigbee

Laparoscopy surgery Oct25 to remove 6cm tumor on the outside of my upper ureter near calyx of kidney. PET scan Jan 20 revealed 7mm ‘node’ in retro peritoneal space. Oncologist recommends Pembro tx (Keytruda)for forseeable future. Should I just have kidney et al removed? I am healthy 82 year old lady and my only real complaint is frequency…

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@judyhigbee
I'm 78 years old and I've been dealing with bladder cancer since 2017 and have had several tumors removed over the years. In 2024 my annual scan found a tumor in my right kidney and 3 in the ureter. The kidney, ureter, and a small section of my bladder were removed. You can live with only one kidney. Good luck with your situation. 🙏🏻

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