Bladder Cancer Group: Introduce yourself and connect with others

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.

This week's member spotlight features a member of the Bladder Cancer group who many of you have crossed paths with. Learn more about @jaxfl, his bladder cancer journey, as well as some behind the scenes things you may not know like his hobby of tinkering on vintage computers, and why he eats his fries with mayonaise. 🙂

– French fries with mayonnaise: Meet @jaxfl https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/french-fries-with-mayonnaise-meet-jaxfl/

Check out all the Member Spotlights here and follow the About Connect blog for future update: https://connect.mayoclinic.org/page/about-connect/

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Profile picture for Colleen Young, Connect Director @colleenyoung

@dks2500, these are great questions to ask your oncologist. Have you had a chance to speak with your team at Anschutz?

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@colleenyoung yes, of course. But we are also interested in gaining an understanding of the opinions and experiences of patients as well.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@lrb67, did you get the results from the biopsies in the meantime and meet with the urologist? How are you doing? What is next for you?

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@colleenyoung First thank you so much for asking and the interest. That alone makes me more comfortable with my situation. I did get the results of the biopsies.
1. Left Ureteral orifice showed Papillary urothelial carcinoma High grade Non-muscle invasive
2. Urinary bladder left lateral wall also non-invasive papillary urothelial carcinoma, high grade
3 Urinary bladder, right neck showed no cancer just mild chronic inflammation from enlarged prostate

My urologist stated the cancer was still stage A (not even stage 1)

He is having me do another 6 week BCG treatment and then follow-up with 3 week maintenance BCG every 3 months for 18 months

If he gets a window with the BCG treatments he would like to do BPH ablation on my prostate. Other than that, he recommended I lose some weight (I am 5'9" and weight 235 pounds. He suggested the Mediterranean Diet.

I have been talking to my brother and sister-in-law since my brother went through bladder cancer 14 years ago. My sister-in-law suggested Mitomycen immediately after TURBT and follow-up with BCG. Their experience also included 36 months of maintenance. Small differences between our cancers though. His was Stage 1 and mine is stage A. His started with a low-grade tumor grade 1 with no mitomycen or BCG following his TURBT. 6 months later it recurred with High grade stage 1. He received MitoMycen immediately after the TURBT, did the 6 week BCG with maintenance for 36 months. Thankfully my brother has been cancer free for 10 years.

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Profile picture for dks2500 @dks2500

Greetings all. I’m an 82 yo male diagnosed with aggressive non-invasive BC, and am about to undergo my second TURBT because my oncologist wants to make sure it’s non-invasive. I understand that the invasiveness can determine the type of treatment recommended. I’m being treated at the Anschutz Cancer Center at the University of Colorado Hospital.

I have three questions:
1. What is the typical treatment plan for slightly invasive BC. Would that still be BCG?
2. Can they determine whether BCG will be effective before beginning its use?
3. Assuming it is, what is the typical follow-up treatment?

Thanks!

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@dks2500, these are great questions to ask your oncologist. Have you had a chance to speak with your team at Anschutz?

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Profile picture for dks2500 @dks2500

Hi Colleen, could you tell me how to jump to a post I’ve bookmarked?

Thank!

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@dks2500 , you can find your Bookmarks in your Profile.
1. Go to your Profile
- Click your username or the silhouette in the top right corner.
2. Select My Profile.
3. Select Bookmarks.

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Profile picture for lrb67 @lrb67

In the fall of 2025 a CT scan identified a 4.5 cm tumor in my bladder. That was removed by TURBT in October 2025. It was a High grade Ta type cancer. In January, I started a 6 week BCG treatment schedule. I received 3 injections at 1/3 dose and 3 injections at 1/2 dose as I was sharing the BCG with other patients. At the end of March 2026, I had Cystoscopy to have a look see. Another tumor was observed and several areas or concern were noted by my urologist. I just had the tumorous stuff removed last week and several new biopsies done. The urologist is very worried about the health of the bladder. I should receive the results next week of those biopsies. I really do not want to lose my bladder.

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@lrb67, did you get the results from the biopsies in the meantime and meet with the urologist? How are you doing? What is next for you?

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Profile picture for 141emp @141emp

@tomef , it’s scary and hard! I’ve found that the journey is not a straight path since my diagnosis in 2023. There are still days I can’t believe I have what I have and the severity of it. I actually was praying for kidney stones after my very first urologist appointment ruled out a urinary tract infection. I’ve celebrated extreme highs thanks to my awesome doctors, family, and friends and extreme lows when the cancer came back . I do believe that if we had to get stuck with this terrible but treatable disease, we’re kind of lucky to have it now because of all of the new treatment options that didn’t exist in the past for the many variants. This Is a great supportive online forum and I wish you the best in your journey.

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@141emp Thanks, you make an excellent point in regard to advancements in treatment options.

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Profile picture for Bobbie @deidre77

@tomef
Hello,
First let me say, when you were given your diagnosis - of course you felt a wide range of emotion. This is a strange new land you have found yourself in and the terrain is unknown.

It is surely no sign of weakness in any way to admit what you are feeling but rather it is the beginning of acceptance which is important. I have found that denial only lengthens the period of emotional fortification.

To tell you "you are not alone" may seem rather trite but being here in this open and accepting support group amongst those who truly can empathize and understand is - I feel - invaluable. You can gain knowledge and support along the way and you won't feel isolated since even those in your family will not be able to completely understand although from what you say, you are receiving a great deal of emotional support.

It will be almost one year since my bladder cancer was discovered. I turned 80, felt healthy and strong, took no medication of any type and then WHAM! I felt exactly as you do now - probably even more so. I was so overwhelmed by mixed emotions and the fear was tremendous. I realize now how counterproductive this was but... being only human... what else what I to feel?

Little by little you will regain your emotional composure as I have and please, do not think of yourself as weak for you are the same person you had been prior to your diagnosis - just as strong and you will now be able to face this challenge as well. By being too harsh on ourselves, we don't give enough credit to our ability to refortify but it takes time. Slowly - as you navigate the various treatment modalities you will be encouraged and supported along the way.

You are not alone. Members here truly understand and I am grateful for this support group.

Sending my best wishes.
Bobbie

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@deidre77 Thanks so much for your words of encouragement Bobbie

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Profile picture for tomef @tomef

Hello everyone. Was diagnosed in December 2025. Had 3 surgeries so far and my BCG treatments will start this Tuesday. To say I'm overwhelmed, frightened and angry are all understatements. Until my diagnosis, I've always considered myself strong, able to face any challenge or adversity. I quickly realized I was wrong. I've never been more afraid of anything in my life. Will I survive to see grandchildren? Will my wife and I be able to enjoy our retirement years, etc. My wife and sons are very loving and supportive, but I don't think they fully understand what I'm going through. I'm hoping this forum will help me accept my current reality. Best regards to all

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@tomef , it’s scary and hard! I’ve found that the journey is not a straight path since my diagnosis in 2023. There are still days I can’t believe I have what I have and the severity of it. I actually was praying for kidney stones after my very first urologist appointment ruled out a urinary tract infection. I’ve celebrated extreme highs thanks to my awesome doctors, family, and friends and extreme lows when the cancer came back . I do believe that if we had to get stuck with this terrible but treatable disease, we’re kind of lucky to have it now because of all of the new treatment options that didn’t exist in the past for the many variants. This Is a great supportive online forum and I wish you the best in your journey.

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