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.

littlemom | @littlemom | 5 days ago

Hi, Bobbie. I’m Anne

janine1991 | @janine1991 | 5 days ago

Hi everyone,
Thanks for all your stories and advice. Urologist has changed Antibiotic to Amoxicillin 500mg TDS for 10 days. (Plus a repeat for another 10 days if still have S&S of UTI) Not to worry about checking for infection (MSU) whilst on antibiotic and back to Oncologist to see if happy to have BCG whilst on antibiotics. I did query about the efficacy of BCG whilst on antibiotics, as I know it reduces the treatment success. He said it won’t make a difference. (Yes sure??) Interesting he said my UTI was hospital acquired. They used NaCl to clean area prior to catheterisation & not Chlorhexidine 1%. I am to insist on them using chlorhexidine from now on. So frustrated with all the blunders so far with private hospital. I am tempted to get on top of this UTI before restating BCG induction., but may take weeks. Worried at the speed high grade CIC has spread in 3 months. Developed 2 more areas from Aug to Nov on Cystoscopy. It’s now January…Urologist also said he was not keen on Radical Cystectomy after all my pelvic radiation in 2024…high risk & potential for complications & poor quality of life post surgery.

deidre77 Bobbie | @deidre77 | 4 days ago

In reply to @littlemom "Hi, Bobbie. I’m Anne" + (show)

@littlemom

Hi Anne,

Nice to meet you. I was surprised you were able to read my entire message since when I went back in to ensure what I had written was OK, for some strange reason it was abbreviated and only part of the first sentence was there. I then requested some assistance but since this is the weekend, there will be no response yet.

If you were able to read my entire message, then how come I was not? Very strange indeed.

Thanks for saying "hello".

Here's wishing you, I and all our fellow sufferers a year filled with hope.

Best wishes,
Bobbie

dorothyb1153 | @dorothyb1153 | 4 days ago

I’ve been diagnosed with the earliest stage hopefully. It’s a recurrence from a decade of being NED. At that time I had early stage and a turbt. Dorothy

Sue, Volunteer Mentor | @sepdvm | 3 days ago

In reply to @deidre77 "Hello good people! Please let me introduce myself: I'm Bobbie, an 80 year old female (<" + (show)

Hello Bobbie @deidre77 . I also reported your lost post so we will see if anyone can find it for you. You might have to replace it yourself but let's see if the moderators can help.

Justin McClanahan, Moderator | @JustinMcClanahan | 3 days ago

In reply to @sepdvm "Hello Bobbie @deidre77 . I also reported your lost post so we will see if anyone..." + (show)

@sepdvm and @deidre77,

Unfortunately, I cannot find the rest of the message from the back end. This appears to be an unfortunate case of the internet gremlins. When writing longer posts, I personally will use another program like word, google docs or the notepad function to write out the post and then copy & paste it to Connect. This way if you happen to have a blip in the internet while posting you don't lose your entire post in the process.

Sorry for the inconvenience this case though.

deidre77 Bobbie | @deidre77 | 3 days ago

In reply to @sepdvm "Hello Bobbie @deidre77 . I also reported your lost post so we will see if anyone..." + (show)

@sepdvm
Hi Sue, thank you for your help which I appreciate.

Apparently even though I was unable to view my own post, at least it appeared to those in the group.

From here on in, if I compose a lengthy post I will be sure to type it in word pad first and then place it in the message area.

Thank you again for your kindness.

Best wishes and may 2026 be sprinkled with joy and hope.

Bobbie

Paul | @pol7 | 18 hours ago

Hello all, I'm new to the group. I'm a 78 year old male in Virginia. My first bladder cancer discovery was in 2017. It was high grade, aggressive, non invasive. I had BCG treatment after the TURBT and was clear for almost a year, when it returned. Same thing, same treatment. Since then, I have had 3 more TURBTs for low grade, non invasive tumors, and I lost my right kidney to cancer in April 2024. I have since been cancer free until now. This past Tuesday I had TURBT for a large, low grade tumor, but this time it had penetrated into the middle lining... but not into the muscle lining. Dr was surprised at it's size because I was clean when he did the last scope 6 months ago. He is now giving me 2 options.
(1) Scope me again in 3 months to see if I'm clear. If so, continue scoping every 3 months rather then 6.
(2) Start treatment of Gem/Doce because BCG doesn't seem to work for me, and scope me for continued observation.

I would be interested to hear from anyone who has had similar conditions and treatments, especially the chemo treatment that I seem to now be facing.
Thank you!
pol7