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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.

Profile picture for Colleen Young, Connect Director
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)
Profile picture for fmfran @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

REPLY
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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)
Profile picture for Colleen Young, Connect Director @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.

REPLY
1 reply
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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)
Profile picture for jfire @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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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)
Profile picture for fmfran @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?

REPLY
2 replies
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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

REPLY
1 reply
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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)
Profile picture for Colleen Young, Connect Director @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!

REPLY
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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)
Profile picture for ronzee50 @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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Profile picture for Sue, Volunteer Mentor
Mentor
Sue, Volunteer Mentor | @sepdvm | Mar 26 9:00am
In reply to @ronzee50 "Hi. My name is Ron. I was diagnosed with invasive, high grade, cancer in my right..." + (show)
Profile picture for ronzee50 @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 | Mar 26 8:38am
In reply to @sepdvm "Hello @kittyhawk4 and welcome to bladder cancer support group. My husband had a high grade bladder..." + (show)
Profile picture for Sue, Volunteer Mentor @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 | Mar 25 11:52pm

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
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