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?

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

Hi all. I'm new to the group. I've had 2 surgeries within a year and now need a 3rd. This time there are only a couple of very small lesions. Mine is non muscle invasive but my doctor wants me to start BCG treatments. because of the high recurrence rate. I will be interested in reading your stories.

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@blazermaniac

Hi all. I'm new to the group. I've had 2 surgeries within a year and now need a 3rd. This time there are only a couple of very small lesions. Mine is non muscle invasive but my doctor wants me to start BCG treatments. because of the high recurrence rate. I will be interested in reading your stories.

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Hi @blazermaniac. My husband started out that way and tired of it quickly. Also his first tumor was muscle invasive. He was a BCG failure but the treatment was not a problem for him. A short (hours) feeling of urgency right after the infusion and then no other side effects. He also had chemo right after his first surgery to remove a diverticulum off the bladder that contained the tumor. After a few years of continued recurrence and a Keytruda trial, he elected to have a radical cystectomy with neobladder formation. He is cancer free for 2 years plus and must catheterize daily and it was a huge surgery with multiple complications. His care has been at Mayo Rochester MN and he is quite satisfied with the results at this point. Read through the previous posts for more information. When is your next surgery scheduled?

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Thank you for the feedback. I've read where others have said that the BCG treatment wasn't bad. That's comforting to know. After several biopsies, mine they do not think that mine is muscle invasive. Because of that, maybe I'll have better luck with BCG (fingers crossed). One of my concerns is cost also. I'm living in Costa Rica now without insurance. I've heard others don't take the full dosage; maybe I'll try that to save money.

I haven't scheduled my next surgery yet but it will likely be towards the end of this month. The recovery times the after the first 2 surgeries were extensive, but the doctor says that since these lesions are tiny the recovery time should be no more than 10 days. That gives me some motivation to have it done sooner than later.

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@blazermaniac

Hi all. I'm new to the group. I've had 2 surgeries within a year and now need a 3rd. This time there are only a couple of very small lesions. Mine is non muscle invasive but my doctor wants me to start BCG treatments. because of the high recurrence rate. I will be interested in reading your stories.

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Hi. Diagnosed high grade NIMBC last April. Two surgery’s and 6 BCG treatments so far. 3 scheduled in November. Cancer is gone for now but high rate of reoccurring. My treatment protocol is pretty much standard. Next look in bladder scheduled for Jan.

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@scott232

Hi. Diagnosed high grade NIMBC last April. Two surgery’s and 6 BCG treatments so far. 3 scheduled in November. Cancer is gone for now but high rate of reoccurring. My treatment protocol is pretty much standard. Next look in bladder scheduled for Jan.

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I'm on a similar path. 2 surgeries & 6 BCG finished. Cystoscopy end of Oct. How long was it from your last of 6 induction treatments to the first of next 3 maintenance treatments?

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It will be about 3 months from last bcg

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I’m new here. I’m here because I have bladder cancer and I’m in maintenance mode. Except for the fact that I’ve got bladder cancer my treatment for the last year has been so far so good. Mainly I got used to it.

I look forward to finding out more from this group.

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6 induction BCG treatments went smoothly. Maybe a little fatigue but I had an 8 hour round trip for treatments. I only missed work the day of treatment due to traveling. Mayo Rochester said they give full dose and rarely will they do a partial dose. It was expensive. Not sure how they would charge for a partial dose.

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Thank you, very much for all you do in this support group
. My bladder cancer was discovered incidentally to a routine urology check up. The cancer was removed the following day without complication. I have had cystoscopies every six months and once a year a CT urogram. After 2 1/2 years there has been no reoccurrence; but, I have been told that there is a high rate of recurrence The cancer was a non-invasive low-grade, urothelial cancer. My next six month follow-up is in early December.
PC

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I have been dealing with reoccurring tumors myself...I go in soon for a Biopsy removal. It's tough.

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