1. < Bladder Cancer
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.

12loves | @12loves | Mar 16 10:05am

I was treated unsuccessfully for UTIs for 3 months before I had a CT scan that found a large tumor. I had that removed, (a 2nd tumor was found at that time.) I will be having the ddNVAC for eight weeks starting asap, followed by surgery. Trying to stay one procedure at a time, I would appreciate help knowing what to expect with that chemo regimen and antidotes to alleviate side effects. (I’m nervous so keep information gentle.)

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18 9:14pm
In reply to @walleyebob "Hi sepdvm Thank you for your wonderful and knowledgeable comments,I learned a lot from you. Please..." + (show)
@walleyebob

Hi sepdvm Thank you for your wonderful and knowledgeable comments,I learned a lot from you. Please wish your husband and boys a wonderful 2025 fishing season,i fish south dakota lakes and the Missouri River. i have fished Lake Erie 6 times staying on Kelleys Island, a wonderful experience. A BCG infusion is something i will ask about.Thank you for answering my questions on Mayo Clinic I do believe Iam going to follow up with them. I will Pray and wish the best for your husband and family. Lake Erie should be getting good fishing about now ::))

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@walleyebob, if you haven't done so already, you can request a second opinion from Mayo Clinic by calling them or filling out the online form. You can get started here: http://mayocl.in/1mtmR63

Do you ice fish too?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18 9:30pm
In reply to @buena "My journey with bladder cancer began last January. BCG # 1 is March 31 and ends..." + (show)
@buena

My journey with bladder cancer began last January. BCG # 1 is March 31 and ends May 5. Wondering about what to expect with BCG therapy discomfort/complications. I have substantial incontinence and live in a condo and am concerned about how best to deal with pads and diapers. Also wondering if I'll be up for golf once the Minnesota weather moderates.

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Hi @buena, Dave. Welcome. I encourage you to join one of the BCG-related discussions here:
- My journey with Bacillus Calmette-Guerin (BCG) treatment https://connect.mayoclinic.org/discussion/first-bcg-treatment/
See all: https://connect.mayoclinic.org/group/bladder-cancer/?search=BCG#discussion-listview

You might find this discussion from the Prostate Cancer group helpful with respect to incontinence. The guys have some great tips:
- Post Op Recommendations https://connect.mayoclinic.org/discussion/post-op-recommendations/

How many BCG treatments are part of your plan?

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2 replies
walleyebob | @walleyebob | Mar 19 8:02am
In reply to @colleenyoung "@walleyebob, if you haven't done so already, you can request a second opinion from Mayo Clinic..." + (show)
@colleenyoung

@walleyebob, if you haven't done so already, you can request a second opinion from Mayo Clinic by calling them or filling out the online form. You can get started here: http://mayocl.in/1mtmR63

Do you ice fish too?

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Hi colleenyoung I did not know that I will do so and thank you so much for the information. The more I search for bc info the more I keep being directed to Mayo Clinic. Out of 125 best bc hospitals NEWS WEEK in 2023 ranked mayo clinic in rochester minn #1. I do truly love to fish for walleye and perch, ice fishing is the best time to fish for perch in sd, and do get out a dozen times a year. iam ready to hit the water. I wish all on this chat site a smooth road on your journey. and be assured you are all in my prayers 🙂

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dswanson | @buena | Mar 19 9:04am
In reply to @colleenyoung "Hi @buena, Dave. Welcome. I encourage you to join one of the BCG-related discussions here: -..." + (show)
@colleenyoung

Hi @buena, Dave. Welcome. I encourage you to join one of the BCG-related discussions here:
- My journey with Bacillus Calmette-Guerin (BCG) treatment https://connect.mayoclinic.org/discussion/first-bcg-treatment/
See all: https://connect.mayoclinic.org/group/bladder-cancer/?search=BCG#discussion-listview

You might find this discussion from the Prostate Cancer group helpful with respect to incontinence. The guys have some great tips:
- Post Op Recommendations https://connect.mayoclinic.org/discussion/post-op-recommendations/

How many BCG treatments are part of your plan?

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Thanks very much. Really appreciate the site you moderate. I begin six weeks of BCG treatments March 31. Wondering what to expect by way of side effects inasmuch as our long Minnesota winter is moderating and the 2025 golf season is about to begin. We generally launch our season mid April. I'm wondering if I'll be able to play 18 holes. Also wondering if the treatments will exaggerate the incontinence I've had as a result of prostate cancer surgery.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 19 1:31pm
In reply to @quirina "Hi everybody! I am 66, born and raised in The Netherlands and living in the USA..." + (show)
@quirina

Hi everybody! I am 66, born and raised in The Netherlands and living in the USA for 22 years now. December 11th 2024, I saw blood in my urine, alarm bells went off, and the next day I was at my doctor's. Doctor first thought it was maybe a UTI but after some urine tests it was not. Within 10 days I had an appointment with a urologist, a week later a Cat Scan. Back to urologist nothing to be seen on Cat Scan but urologist, just to be sure, checked my bladder with camera and found a small tumor. Of course, I was in total shock since I hoped it was a kidney stone that caused the bleeding. 10 Days later I had a TURBT in combination with a 1-time chemo. Urologist told me that during the operation it was difficult to find the tumor but found it, took it out and saw my bladder looks fine and healthy, except for the small tumor on the edge of my bladder. Still, I hoped that would be it but out of prevention I will start BCG treatment coming Tuesday, March 11th. She is positive but I am absolutely not looking forward to it and to be honest I am scared to death. I try to stay positive but wow that is difficult even if my family is telling me I will be fine. My thoughts are with you all too and will follow your journey.

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Hi @quirina, how did your first BCG treatment go? How are you doing?

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12loves | @12loves | Mar 20 9:05am
In reply to @crtrucker "just diagnost with invasive bladder cancer in the muscles of the bladder really worried thanks" + (show)
@crtrucker

just diagnost with invasive bladder cancer in the muscles of the bladder really worried thanks

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I send sincere sympathy. I am returning to Rochester today for another test and meeting with an oncologist. Neither were mentioned at my previous appointment and I understand your worry, this is so tough. Big hugs of encouragement as you go forward in treatments.

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fmfran | @fmfran | Mar 20 10:48am

I was diagnosed in 2020 with a tumor in my bladder. It was surgically removed. I have undergone many follow up minor surgeries to remove reoccurring cancer cells. I was treated with Gemzar for a year and a half until May of 2024. There was no cancer present again until December of 2024. The cancer returned as a high grade cancer, still non-invasive. I had two more surgeries and am about to start BCG therapy.

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2 replies
deb2024 | @deb2024 | Mar 20 4:00pm
In reply to @fmfran "I was diagnosed in 2020 with a tumor in my bladder. It was surgically removed. I..." + (show)
@fmfran

I was diagnosed in 2020 with a tumor in my bladder. It was surgically removed. I have undergone many follow up minor surgeries to remove reoccurring cancer cells. I was treated with Gemzar for a year and a half until May of 2024. There was no cancer present again until December of 2024. The cancer returned as a high grade cancer, still non-invasive. I had two more surgeries and am about to start BCG therapy.

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I hope and pray that your BCG treatments go well! Will be thinking of you. Rest & drink plenty of fluids after your treatment.

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fmfran | @fmfran | Mar 20 5:48pm

Thanks so much for the welcome and advice. Like everyone else I have a lot of anxiety.

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