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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.

amu45sin | @amu45sin | 1 day ago

Have 2.5 cm tumor in bladder close to tube from kidney.
Will have it removed on March 7thi hope the pathology report comes back ok.

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babz0518 | @babz0518 | 1 day ago
In reply to @babz0518 "I am doing alright to a certain extent. I just started BCG treatments and have been..." + (show)
@babz0518

I am doing alright to a certain extent. I just started BCG treatments and have been experiencing some discomfort. My blood pressure has been elevated since last Friday.

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Thank you 😊

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Mentor
Sue, Volunteer Mentor | @sepdvm | 1 day ago
In reply to @babz0518 "I was diagnosed with bladder cancer in August 2024, had two small cancerous tumors removed. Another..." + (show)
@babz0518

I was diagnosed with bladder cancer in August 2024, had two small cancerous tumors removed. Another issue was the chemotheraphy drug that was placed in my bladder after surgery caused me to have a funny taste in my mouth and 10 days later, quite a bit of my hair fell out. My urologist said it was hereditary but I have my doubts. I also had a Foley catheter in for 4 months. What an experience!
Now I have started BCG treatments and that really took the wind out of my sails, my BP was elevated and extremely tired for 5 days. I have 5 more treatments and wondering if the treatments will be as prevalent as the first treatment. Please advise. Thank you
Barbara

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So sorry to hear you have bladder cancer @babz0518. My husband was diagnosed with a highly aggressive UCC in 2019. He also had a reaction to the post operative chemo infusion into his bladder. He was on BCG for the full cycle and into maintenance when he had another tumor so different treatments followed. His initial BCG infusions gave him more side effects and those lessened as he went along. Everyone is different in the way their immune system reacts to BCG though. Listen to your body and rest. Your immune system is responding to the BCG and actively working to control any new tumors in your bladder. Good luck with this treatment.

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babz0518 | @babz0518 | 1 day ago

Thank you, Sue. Your reply is encouraging and I hope and pray the cancer cells are eradicated.

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rickfromaz | @rickfromaz | 16 hours ago

I have been battling with aggressive high grade Bladder Cancer since October of 2021. I have had a total of 12 surgeries to remove tumors, the latest of which was 2/24/25. The previous surgery was in September of 2024 to remove 4 tumors. I have undergone multiple treatments including a trial drug at Mayo. The staff, nurses and my Doctor, Mark Tyson, have been wonderful and helping me battle this cancer. After this last surgery, Dr. Tyson has recommended that I proceed with removing my bladder due to the high frequency of the tumors return and quantity and size. I'm scheduled to get a neobladder operation on 3/31/25. I would love any feedback from those who have undergone this procedure and your experience with this surgery and how life has been after.

Thanks Rick

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