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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.

Quirina | @quirina | 12 hours ago
In reply to @colleenyoung "Hi @quirina, how did your first BCG treatment go? How are you doing?" + (show)
@colleenyoung

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

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Hi Colleen!
I don't want to jinx anything since my first 3 treatments went great, no side effects at all. Hopefully the coming 3 will be the same and something tells me they will.
Thanks for asking!

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fmfran | @fmfran | 4 days ago
In reply to @ronzee50 "Hi. My name is Ron. I was diagnosed with invasive, high grade, cancer in my right..." + (show)
@ronzee50

Hi. My name is Ron. I was diagnosed with invasive, high grade, cancer in my right utterer 9 months ago. It became high grade bladder cancer before I could have it removed. I have had Turbt surgery to remove as much of the cancer as possible. After that, I had 4 rounds of chemo in preparation for a radical cystectomy. That is scheduled for May 8th.

Luckily, the original cancer was found totally by accident. So, I’m hoping to be cancer free after my surgery. I plan on having an ileal conduit with a stoma.

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Gods blessings be with you. Keep us posted after surgery.

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Mentor
Sue, Volunteer Mentor | @sepdvm | 4 days ago
In reply to @ronzee50 "Hi. My name is Ron. I was diagnosed with invasive, high grade, cancer in my right..." + (show)
@ronzee50

Hi. My name is Ron. I was diagnosed with invasive, high grade, cancer in my right utterer 9 months ago. It became high grade bladder cancer before I could have it removed. I have had Turbt surgery to remove as much of the cancer as possible. After that, I had 4 rounds of chemo in preparation for a radical cystectomy. That is scheduled for May 8th.

Luckily, the original cancer was found totally by accident. So, I’m hoping to be cancer free after my surgery. I plan on having an ileal conduit with a stoma.

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Welcome to Connect Bladder Cancer Ron, and sorry you have to be here.
My husband is 3.5 years out from his neobladder surgery and has been clear of cancer since then. It is a lot of surgery to go through, but the best chance of a cure. Make sure to ask about what complications to expect after surgery so that you are prepared. My husband had many issues and I felt we should have been better prepared by asking more questions. It sounds like you were very lucky to get the diagnosis by accident. I feel like that luck will continue as you take this next step and have surgery in May. Be patient in your recovery as it will take some months before you really feel strong again and adjusted to your new normal.

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tom26 | @tom26 | 4 days ago
In reply to @sepdvm "Hello @kittyhawk4 and welcome to bladder cancer support group. My husband had a high grade bladder..." + (show)
@sepdvm

Hello @kittyhawk4 and welcome to bladder cancer support group. My husband had a high grade bladder cancer diagnosed at the age of 67 in 2019. The frequent recurrences, turbts, etc pushed him to have a radical cystectomy with neobladder in 2021. Along the way he had chemo, BCG, immunotherapy and many CT Urograms, cystoscopies and occasional PET scan. I can't say that he ever had all the symptoms you are describing. Some treatments left him with extreme fatigue and poor appetite or temporary bladder discomfort but those symptoms gradually resolved.
Initially his blood in the urine was misdiagnosed by local urologist and despite local cystoscopy and CT his tumor was missed. Only the abnormal cytology, which was ignored, was caught by a thorough doctor during an executive physical at Mayo Clinic. As a result most of his cancer care has been done at the Mayo in MN.
Because of our experience, I am quick to recommend a second and even third opinion when things just don't seem to be going right. Asking for a referral to a big cancer center or referral center can be a most important step. Sometimes, as difficult as it seems, travel for medical care can be lifesaving. We drive 10 hours to Mayo and have for 13 years for my rare head and neck cancer and I feel they are why I am alive today. You are your husband's best advocate and you both must take control of his medical care by researching and asking questions. It is never wrong to request a second opinion. Do you have a big referral center nearby?

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BTW, Iforgot to state my mar is Tom

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ronzee50 | @ronzee50 | 4 days ago

Hi. My name is Ron. I was diagnosed with invasive, high grade, cancer in my right utterer 9 months ago. It became high grade bladder cancer before I could have it removed. I have had Turbt surgery to remove as much of the cancer as possible. After that, I had 4 rounds of chemo in preparation for a radical cystectomy. That is scheduled for May 8th.

Luckily, the original cancer was found totally by accident. So, I’m hoping to be cancer free after my surgery. I plan on having an ileal conduit with a stoma.

REPLY
2 replies
tom26 | @tom26 | 5 days ago
In reply to @buena "Thanks for the kind words and golf invitation. Courses here in Rochester are beginning to open,..." + (show)
@buena

Thanks for the kind words and golf invitation. Courses here in Rochester are beginning to open, but March can be a snowy month in Minnesota. I played in snow in my younger years, but wiser now. Hope your BCG treatments chase those cancer cells away. Also hope you have access to our Mayo Jacksonville facility. Thanks again for your well wishes.

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Hi all,

I am new to the group and wish I had known about this 7 years ago. I am an avid biker and after a long bike ride back in 2018, I saw blood in my urine. The local urologist I went to said he saw a tumor in my bladder. I was shocked as this does not run in family and am very healthy.
The surgeon removed the tumor which was a high grade but had not gotten into the bladder wall. I can thank the lord that it was detected early. Another month and it could have been a different recovery. I started BCG treatments for the next few months and made it through 90% until my body started to reject them.
Bladder was monitored via cystoscopy over the next 7 years, every 3 months , then 6 months and last 2 years it was yearly, all negative. It was starting to feel like I had gotten past this and my dr felt the same.
However, this last month, the scope revealed a small growth on the back wall of my bladder. After 7 years!!!
The surgery was yesterday and we are waiting on the pathology report to determine the next steps, bCG or other immunotherapy.
I wonder if there are any case studies or data to support using bCG as a preventive. The prior year, the scope was clean.
Has anyone had similar experiences?

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dswanson | @buena | Mar 22 7:56am

Thanks for the kind words and golf invitation. Courses here in Rochester are beginning to open, but March can be a snowy month in Minnesota. I played in snow in my younger years, but wiser now. Hope your BCG treatments chase those cancer cells away. Also hope you have access to our Mayo Jacksonville facility. Thanks again for your well wishes.

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1 reply
dswanson | @buena | Mar 21 9:10pm
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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I'm scheduled for six beginning March 31, then cystoscopy in June to check results. I've also had prostate and skin cancer and am wondering if cancer cells are looking for additional opportunities in and around my body. Also wondering how long it takes to determine if BCG immunotherapy is successful for my bladder cancer and what's next if it is not. I'm 84 and otherwise in generally good health. Thanks for your site recommendations. Helpful and much appreciated. Anxious to clean up my golf clubs for the 2025 season but wondering about energy levels and fatigue.

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fmfran | @fmfran | Mar 21 4:05pm
In reply to @buena "Thanks very much. Really appreciate the site you moderate. I begin six weeks of BCG treatments..." + (show)
@buena

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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Good luck Dave. I start my BCG on April 10. I live in Florida. I'm fully expecting to hear that you are playing golf when your golf season begins. If you want to play in Florida, I have plenty of room.

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jenali | @jenali | Mar 21 12:13pm

My name is Jennifer, I am not the patient I'm here hoping to find information out to help my 78 year old father. He's not technologically savvy so I told him how helpful this website was when I was going through breast cancer and an aortic aneurysm surgery that I would put his story out and see if I can get him some advice.

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