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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.

fmfran | @fmfran | Mar 26 6:49pm
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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Quirina | @quirina | Mar 30 10:45am
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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jfire | @jfire | Apr 1 11:06am

Hello, My name is Jason I was diagnosed with Non Muscle invasive bladder cancer 3 years ago. Since then I have undergone 4 Surgeries to remove the tumors and ongoing BCG treatments. It can get really old living your life by your every 3 month checkup.
My question to the group is that I am currently being seen by a University Hospital, but due to other life issues will most likely be moving to Florida this fall within 2 hours of the Jacksonville Mayo clinic. I am just curious what it is like to transfer care and looking for any pointers etc. Moving is stressful enough, but then adding in transferring your Cancer care adds a whole new dimension.
Thank you,
Jason

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 1 9:06pm
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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@fmfran, when do you start BCG therapy?

@buena, I believe you started BCG yesterday if I recall. I hope the first infusion went as well as can be expected. Was there anything that you wished you had known or will feel better prepared for next treatment?

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2 replies
Mentor
Sue, Volunteer Mentor | @sepdvm | Apr 2 2:57pm
In reply to @jfire "Hello, My name is Jason I was diagnosed with Non Muscle invasive bladder cancer 3 years..." + (show)
@jfire

Hello, My name is Jason I was diagnosed with Non Muscle invasive bladder cancer 3 years ago. Since then I have undergone 4 Surgeries to remove the tumors and ongoing BCG treatments. It can get really old living your life by your every 3 month checkup.
My question to the group is that I am currently being seen by a University Hospital, but due to other life issues will most likely be moving to Florida this fall within 2 hours of the Jacksonville Mayo clinic. I am just curious what it is like to transfer care and looking for any pointers etc. Moving is stressful enough, but then adding in transferring your Cancer care adds a whole new dimension.
Thank you,
Jason

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Hello Jason @jfire. My husband and I have not switched doctors and locations for medical care, but we both have had good experiences with our local oncologists working with our Mayo staff where our care originated. Because Mayo is a 10 hour drive for us, we both have had infusions, radiation and even emergency care with direct contact between Mayo doctors and local doctors. Once your information is on a portal and all doctors can have access, it is easier for them. You are doing the reverse with switching your care to Mayo. I would plan it ahead asking your local urologist to start a referral to Mayo Urology. If a linking portal is not available then records can be sent, faxed, and emailed to provide a smooth transition. I would start early to make sure you are accepted as a patient then schedule your first visit for after the move. I hope all goes smoothly for you. Faith in your cancer team is so important.

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fmfran | @fmfran | Apr 2 4:43pm
In reply to @colleenyoung "@fmfran, when do you start BCG therapy? @buena, I believe you started BCG yesterday if I..." + (show)
@colleenyoung

@fmfran, when do you start BCG therapy?

@buena, I believe you started BCG yesterday if I recall. I hope the first infusion went as well as can be expected. Was there anything that you wished you had known or will feel better prepared for next treatment?

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Colleen
I start my BCG next Wednesday for my six week infusion. Thanks for remembering!! I'm expecting flu symptoms, maybe? Have you done this? I met with Dr. Lyons who was amazing. He was very happy with the care I'm receiving from my local
doctor. I pray every day and night for healing.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 2 6:15pm
In reply to @fmfran "Colleen I start my BCG next Wednesday for my six week infusion. Thanks for remembering!! I'm..." + (show)
@fmfran

Colleen
I start my BCG next Wednesday for my six week infusion. Thanks for remembering!! I'm expecting flu symptoms, maybe? Have you done this? I met with Dr. Lyons who was amazing. He was very happy with the care I'm receiving from my local
doctor. I pray every day and night for healing.

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@fmfran, I haven't done BCG. You might want 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

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dswanson | @buena | Apr 2 8:38pm
In reply to @colleenyoung "@fmfran, when do you start BCG therapy? @buena, I believe you started BCG yesterday if I..." + (show)
@colleenyoung

@fmfran, when do you start BCG therapy?

@buena, I believe you started BCG yesterday if I recall. I hope the first infusion went as well as can be expected. Was there anything that you wished you had known or will feel better prepared for next treatment?

Jump to this post

Thanks for asking. Anything I wish I had known? Sure. I imagined my bladder would be filled with BCG and wondered how I could deal with that discomfort for an hour. When I arrived I discovered only a small amount of BCG is inserted. Didn't even feel it. Also wondered how I could shift around on my back, then sides, then stomach for an hour. Wasn't necessary. I was on my back with a pillow, a warm blanket and a tv remote for the hour. No need to shift around. I wondered about side effects and had none, except for a small amount of blood in my urine after treatment. The burning sensation associated with urination was gone in two days. Now I'm wondering how long it's necessary to flush twice, wash hands carefully and take special precautions with Depends disposal. I suspect it's unnecessary after two days inasmuch as the BCG must be well flushed from my bladder by now. I'm also wondering how often a single, six- week course of BCG treatments is all that's needed. I'm scheduled for another cystoscopy in June, but would be interested in knowing more about my prospects for recovery. Bottom line: I'm grateful to all the fine, friendly folks at Mayo who diagnose and treat human diseases so compassionately and skillfully. And I'm especially grateful to God for healing.
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1 reply
fmfran | @fmfran | Apr 3 9:27am
In reply to @buena "Thanks for asking. Anything I wish I had known? Sure. I imagined my bladder would be..." + (show)
@buena

Thanks for asking. Anything I wish I had known? Sure. I imagined my bladder would be filled with BCG and wondered how I could deal with that discomfort for an hour. When I arrived I discovered only a small amount of BCG is inserted. Didn't even feel it. Also wondered how I could shift around on my back, then sides, then stomach for an hour. Wasn't necessary. I was on my back with a pillow, a warm blanket and a tv remote for the hour. No need to shift around. I wondered about side effects and had none, except for a small amount of blood in my urine after treatment. The burning sensation associated with urination was gone in two days. Now I'm wondering how long it's necessary to flush twice, wash hands carefully and take special precautions with Depends disposal. I suspect it's unnecessary after two days inasmuch as the BCG must be well flushed from my bladder by now. I'm also wondering how often a single, six- week course of BCG treatments is all that's needed. I'm scheduled for another cystoscopy in June, but would be interested in knowing more about my prospects for recovery. Bottom line: I'm grateful to all the fine, friendly folks at Mayo who diagnose and treat human diseases so compassionately and skillfully. And I'm especially grateful to God for healing.

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Thanks for the information. It helps ease the anxiety overload. I'm glad yours is going well. I'm sending healing prayers your way.

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ijw1950 | @ijw1950 | Apr 3 10:37am

Hi,
My name is Irene & my husband had a procedure to
check a 2 cmm tumor for bladder cancer. I talked to
the dr. after the procedure & she says it looked like
cancer, but will have to wait until the pathology report.
Very nervous, I am having trouble waiting for the results

I

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