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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?
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@raybnyc, sounds like your team is very thorough. To find discussions relevant to your situation, I suggest using the Bladder Cancer group search.
For example, here are search results for the search term T1: https://connect.mayoclinic.org/group/bladder-cancer/
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1 ReactionI was diagnosed with high grade non-invasive bladder cancer in June of 2022. Within a week I had surgery to remove the tumor. Two or three months later I had another surgery to remove lingering cancel cells. I started my BCG treatments in November of 2022. In February of 2023 my first scope after my first series of BCG treatments revealed the need for a third surgery to remove small lingering cancer cells. I’ve continued scopes and treatments since then with no additional cancer. My next scope is scheduled for March 16th.
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1 Reaction@grifftg07, treatment can be tough on the kidneys. I'm glad your team is monitoring their function. What is your follow-up program/testing? How are you doing?
I have been dealing with prostate cancer since 2023. I had an RARP in 2023. The cancer returned in 2024 and I had 39 radiation sessions. Two months after the end of radiation I began having blood in my urine. My Radiation Oncologist said that it was likely due to the radiation and we would keep an eye on it. That was June, 2025. Yesterday I had a cystoscopy and learned I now have bladder cancer. I go in for a biopsy in March. I'm wondering if this cancer is either related to the prostate cancer or if it was caused by the radiation.
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1 Reaction@rwells50, welcome. If I've interpreted your timeline correctly, you've been NED (no evidence of disease) since 2023. Do I have that right? How often have you had scopes over the 3 years?
@colleenyoung
Yes you have that right. I started the first two years with scopes every three months. The last year they have been every 6 months, so about 10 over the 3 years. My next one is March 2nd.
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1 Reaction@rwells50 You have been through many tests ! Hope all is going well for you. I was diagnosed high grade BC Jan 9th, so far had TURBT surgery Jan29th. Second surgery March 10th. Then BCG treatments. Since catheter was removed 10 days post surgery I have been in diapers with frequent urine urges. Middle of night especially. Have you experienced this? Since you have had a series of BCG how did you manage them, please share any helpful tips. Have you had any reactions to them, have you changed you diet? You can tell I’m not looking forward to this adventure….
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1 Reaction@rafcer
I’ve had many catheters and my experience has been frequent urine urges for at least 24 hours after each one. My immediate concern, after the doctor explained how the BCG treatments were going to work, was all the catheters that would be required. She said that I would get used to them. I can’t say that I ever got used to them but after a while I did get where I knew what to expect. The secret to them really is to relax, as hard as that is to do. The only side effect I had from the treatments was burning for the first few urinations after the treatment. As I said above the frequent urine urges would continue through the night. I did not have any diet changes. You can get through it. Hope this helped.
@rwells50 In regards to the catheter did you mean just when the dr inserted the BCG into bladder? My bladder urges started after TURBT surgery when I was sent home with catheter for 10 days. Bladder urges still continue as of now. How long does BCG stay in your urine since I was told about using one bathroom,using bleach in toilet bowl so nobody gets contaminated. What were you told regarding if BCG gets on clothing? You can tell I’m doubtful because Dr just gave me pamphlet on BCG. I’m so thankful for this group!
@rafcer
The catheter is inserted first and that’s where the discomfort occurs. The BCG is then put in through the catheter and there is no discomfort there. It’s been almost 4 years since my surgery. I don’t remember if bladder urges continued once the catheter was removed. I was told about using the bleach but not anything about getting it on my clothes, and to my knowledge I never got any on my clothes. I really only experienced about one day of issues after each treatment and then things were pretty normal until the next treatment.