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 annabel55 @annabel55

@talltxlady thank you for your message.
Well done for quitting smoking I know it’s hard and staying off them. Worth it… for us! I bet it was annoying to get the diagnosis after you quit.
I think it is a smaller percentage inherit it. Nope I did not work with or in a place with chemicals. Apparently it has only been growing for a year. So something triggered it a year ago! I have no idea what! 🤷‍♀️
Did you have your bladder removed? I’m getting use to the idea that might have to happen.
Wishing you all the best.

Jump to this post

@annabel55 no ma'am, I still have my bladder 🙏🙏🙏

REPLY
Profile picture for skybolt @skybolt

Welcome. My husband had aggressive muscle invasive bladder cancer. He did have his bladder removed and his prognosis is excellent. He never smoked but worked on heavy equipment with oils and chemicals related to automotive and equipment repair for 20 plus years. Ironically two of his first cousins had bladder cancer. A male who smoked for years and a female who did not smoke. They are both alive and well.

Jump to this post

@skybolt thanks for your message. I am glad that your husband’s prognosis is excellent. Good to hear his cousins are doing well too.
Thanks again. 🙂

REPLY
Profile picture for openloc1949 @openloc1949

Hematuria led to dx of high-grade ca; have had 2 TURBTs. Interested in anyone near my age (76) going thru follow-up treatment... what did you have (BCG?) and what were side effects. I'm not interested in prolongation of life if the treatment prevents pleasant daily life🙏

Jump to this post

@openloc1949
I had BCG with no side effects... some people do get side effects.... but I've had a very pleasant daily life. As a matter of fact I've been eating better and exercising every day. I feel great and am doing my part. the rest is up to the doctors and the medicine.

REPLY
Profile picture for jacks1953 @jacks1953

@openloc1949
I had BCG with no side effects... some people do get side effects.... but I've had a very pleasant daily life. As a matter of fact I've been eating better and exercising every day. I feel great and am doing my part. the rest is up to the doctors and the medicine.

Jump to this post

@jacks1953
Wonderful, thank you!!

REPLY

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

REPLY

TURBT is generally very safe. Unless there are other medical issues or allergies to anesthesia.

REPLY
Profile picture for keith0513 @keith0513

@jaxfl
Thanks for your reply. My next cystoscopy will be a blue light with TURBT if needed. I'm sure my Urologist is not a oncology urologist but very well trusted in his community.

In addition to all this, I have a 2nd opinion scheduled with Memorial Sloan Kettering on 11/13 to confirm the findings and possible treatment options. In my honest opinion, if I am assured that there is/are no cancer present I will move ahead with the Diverticulectomy. Depending on the 2nd opinion of course, Even though this is a second recurrence for me, it feels all very new to me.

Jump to this post

@keith0513, how did the appointment as MSK go? What did you find out?

REPLY
Profile picture for jaxfl @jaxfl

TURBT is generally very safe. Unless there are other medical issues or allergies to anesthesia.

Jump to this post

@jaxfl Thanks for your response, appreciate the positive voice❤️

REPLY
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.

Jump to this post

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

REPLY
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.

Jump to this post

@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.

REPLY
Please sign in or register to post a reply.