Bladder Cancer Group: Introduce yourself and connect with others

I would change to an oncology urologist ASAP. General urologists have good intentions but are usually not specialized in this subject matter obviously. Did you have a CT (urogram)?

If the blue light TURBT finds CIS elsewhere a partial RC is no longer an option.
https://emedicine.medscape.com/article/446101-overview

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🙏

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.

You’re fortunate…stick with Mayo…they are absolutely 1st!

Hi, I have been reading posts here (thanks to all that posted) and thought I would say hi.
15th October I was told I would have to have an operation. On the 20th I had an operation to remove what was aggressive high bladder cancer. I am female 55 years old, don’t smoke (about 13 years ago I smoked for a year, that’s it) and always been so healthy, my friends were shocked. I had inherited bladder cancer and something triggered it a year ago. It has all been a shock. I went back to work as a TA in a school last week which was nice to have some normality.
Today I had my second pre op and am waiting for my second operation to remove more so they can see if the tumour penetrated the bladder wall/ muscle or not. The challenges life throws at one!
I am hoping to get a cancellation and have my operation earlier than planned which is at the end of this month. 🤷‍♀️

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.

@annabel55 I hope you get good results with your upcoming surgery. You definitely have to stay on top of an aggressive bladder cancer as it likes to return. My husband is 5 years into this battle and his was muscle invasive. Multiple surgeries and procedures later and he decided to have a radial cystectomy with neobladder formation as the best chance for a cure. Despite complications, he is very happy with his decision, and is still cancer free. Cancer certainly does take over your life and it's good that you have been able to get back to work. It is a good distraction. Keep us informed and healthy wishes for you.

@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.

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.

@sepdvm thank you. Yes, hoping for a good result and the tumour not being muscle invasive. 🙏🏻
Yes, thank you. The surgeon did say that will probably return.
That’s wonderful to hear that your husband is cancer free now. It’s also nice to hear of a successful story with the radial cystectomy with neobladder formation. I was thinking the other option was better, the stoma bags. Maybe they are much of a muchness?? I actually have not delved too deep into the information yet. Just read a little bit.
Thank you for your healthy wishes and to your husband and you too.
Yes.. it’s going to be challenging. 😬