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.

Profile picture for jrappster @jrappster

Hi my name is Jeff
I have a Transurethral resection of bladder tumor scheduled for December 5th
At this point not sure of type of cancer or safety of the procedure to remove the tumor

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@jrappster, Hi Jeff. To help you prepare for your upcoming transurethral resection of bladder tumor (TURBT), you might be interested in these related discussions and ask any questions you may have:
- Bladder Tumor Scraping: What is recovery from TURBT like?https://connect.mayoclinic.org/discussion/turbt-first-time-for-husband-with-bladder-tumor/
- How soon can one fly after TURBT? What is needed for at home care?https://connect.mayoclinic.org/discussion/turbt-procedure/

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Hi, I have had my liung cancer sorted and now moving on to have bkaðer cancer sorted.was to be BCG but whilst fixing lungs has now become muscle invasive so going for radiotherapy. Unfortunately this now on hold as found that can not empty bladder for CT scan so havingvto have treatment. What a Palaver

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Hi, I was diagnosed with BC 5 months ago, had 2 Turbs for total removal/resection of malignant tumors and then after 6 weeks started my treatment and just finished my 6 weeks/times BCG inductions.
Firstly was low grade pta type and then doctor said it might be intermediate type

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Profile picture for Colleen Young, Connect Director @colleenyoung

@jr1466, Welcome. How is the recovery from the TURBT going?

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@colleenyoung Hi! Overall pretty smooth recovery after 17 days. Small blood clot maybe once a day and occasional “rust” in the bathroom, especially overnight. But nothing unexpected.

Have learned that finding a good hydration level is really important. I was doing a 20-ounce water/Gatorade every two hours but was feeling like it was flooding the system a bit, so I backed it off to a bottle every three hours and that’s been a good pace for me.

At Mayo today in preparation for BCG starting in December.

Hope everyone in the US has a nice Thanksgiving!

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Profile picture for lannak @lannak

@talltxlady So amazing!!! Congratulations!!! Obviously you were able to tolerate the BCG treatments for 3 years. Did you have any side effects during the 3 years?

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@lannak absolutely, yes. Severe burning pain while holding the BCG for 2 hours, burning while urinating along with some blood sometimes 2 to 3 days after, along with fatigue and flu like symptoms and just general malaise. The burning got worse as treatments progressed. But we do what we need to do and I thank God it's working.

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Profile picture for talltxlady @talltxlady

Good morning @lannak. I recently had my cystoscopy which came back clean. Got my next semi-annual cysto scheduled for 6 months out. Doctor said if next cysto comes back good I will be at the 5 year mark at that point and can start doing annual cystoscopys instead of semi-annual. I also took 3 full years of BCG treatments.

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@talltxlady So amazing!!! Congratulations!!! Obviously you were able to tolerate the BCG treatments for 3 years. Did you have any side effects during the 3 years?

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Good morning @lannak. I recently had my cystoscopy which came back clean. Got my next semi-annual cysto scheduled for 6 months out. Doctor said if next cysto comes back good I will be at the 5 year mark at that point and can start doing annual cystoscopys instead of semi-annual. I also took 3 full years of BCG treatments.

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Profile picture for talltxlady @talltxlady

Welcome @annabel55 so sorry you're having to go through all of this and the surgeries.
I, too, was diagnosed with high grade NMI bladder cancer 4 years ago. Hopefully yours is not invading the muscle. Also, I didn't realize bladder cancer could be inherited. Besides the smoking for a year were you ever exposed to any chemicals of any sort? Just curious. I smoked for 33 years so there's no question as to where mine came from. By the Grace of God I managed to quit smoking 7.5 years ago. Three and 1/2 years into my quit was when I got my diagnosis, but I pushed through and never picked them back up again. Best of luck to you on everything.

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@talltxlady If I may ask what are you currently doing for treatment at 4 years out. I am 1 year post diagnosis. I’ve had 12 rounds of BCG and 3 TURBTs. My last 2 scopes were clear but I can’t handle the BCG. My doc said to hold the last round of BCG and I get an in office scope in January. I’m nervous about not being on anything for now.

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Profile picture for jr1466 @jr1466

Hi. I’m a 53yo male and was diagnosed with T1 carcinoma in situ last month. I am being treated at Mayo in Rochester (about 6 hours from where I live) and so far have been very impressed with the care I’m receiving. It’s been worth every minute of the long drives.

I had a TURBT on Friday and will begin BCG in December. This is my first major health issue of any kind…I had never even spent a night in the hospital until last month.

Thank you to everyone for sharing their knowledge and experience in this group…it’s been helpful. I hope to do the same as I work through this.

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@jr1466, Welcome. How is the recovery from the TURBT going?

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