Bladder Cancer Group: Introduce yourself and connect with others

I am heading to Mayo Jacksonville on March 27th for surgery. Andrew Zganjar, M.D is my doctor. This seemed like the best odds of beating the cancer.

@frysredjacket, wow, that must've been scary. For a bad and very rare situation, it sounds like you were in good hands at Mayo Clinic.

Have you learned with the updated treatment plan is for spread to the prostate? How are you doing?

you are very kind.

I'm a 52 year old male. Originally diagnosed with High Grade Urothelial Carcinoma In Situ in late 2022. After some initial fumbles with a local urologist, I found my way to Mayo.

I had my first instillation of BCG in '23, 6 treatments. It didn't take and I was scheduled for a cystectomy. While awaiting that procedure I had a mild stroke (luckily received the clot busting drugs in time). Obviously, they paused the cystectomy and subsequently ordered a second round of BCG to some improvement. In the meantime, I met with a Neurologist regarding the stroke. It was discovered that I had Central Nervous System Vasculitis, and was ultimately the cause for the stroke.

Unfortunately, I am a total unicorn. I am currently the only living person with BCG induced CNS Vasculitis. I'm the first case at Mayo in 20 years and from the research I've found, one of two folks under 80, and anywhere from the 5th to the 10th person ever to have this.

Recently, I had another biopsy to discover the cancer has spread to my prostate.

That's me in a nutshell. I am currently waiting for my plan of attack. I'm scared to death thanks to the research I've done. I'll keep you all informed.

I'm not trying to scare anyone. In fact, it's the opposite. What's happening to me is RARE. The procedures and treatments are quite safe and effective. If you have any questions, I've been through a lot and would gladly give you my experience. Good luck to you all.

I am a 73 YO male. In mid Dec I started peeing brown blood and a few days later it turned red. Went to the ER and the CT scan showed growths on my bladder. Last week I had the growths removed during the biopsy procedure. My follow up with the urologist is in a couple days. So we shall see what he plans for recovery. Some of what I read was not very encouraging.
I just got my pathology report. some I understood some I did not.
Recap
A 2.5cm tumor was taken out for pathology. This tumor and 2 smaller ones were removed and area cauterized.
Extensive high grad papillary urothelial carcinoma. OK high grade (not good) cancer.
With Foci of Lamina propria invasion. The cancer cells were detected in next level tissue.
Definitive angiolymphatic invasion is identified. Not sure but sounds like cancer cells in blood and lymph nodes.
Small microscopic focus of muscularis properia not involved in the tumor. I think muscle layer does not have cancer cells

@nolaughingmatter, I can imagine you are nervous. If the biopsy confirms urothelial cancer, you might be interested in these related discussions:
- https://connect.mayoclinic.org/group/bladder-cancer/?search=urothelial%20&index=discussions

Hi, I can relate to your situation. I’m a 70 year old female & was diagnosed with HG urothelial cancer 2 years ago. The medical field has made great progress in treating this type of cancer. There are some good websites that explain the treatments and I hope you are able to ask your doctors what treatments are available to your particular situation. Be encouraged that this can be difficult to deal with but there will be brighter days ahead. I’ll be thinking of you.

I haven't seen the urologist yet so sadly I have no idea what the plans are. I just know that my bladder needs to be removed from researching it myself. Then I read some people have chemo before but some just have it removed and have it after or immunotherapy. I hopefully will know a plan when I finally see the urologist on Wednesday. Depending on that meeting I will know if I need to look for someone else. I am expecting him to have a plan and dates ready to start as he has had a month now to do that. Thank you

Are they planning a radical cystectomy immediately or will you have chemo before bladder removal? I had three months of chemo, a month wait to help my body recover from it a bit and then bladder removal. I also had a muscle invasive tumor that was 5 cm. (My only tumor)

If you aren't happy with any of your doctors remember there are many more out there. Don't be afraid to switch. You'll know when you've found the right ones and that can help give peace of mind. Prayers for you.

I hope I get a team care. You would assume that alot should be ready for me to start as it will be just over a month and he already knows my bladder needs to be removed. He hasn't even completed paperwork for me to give manulife so my short term disability doesn't end next Friday. And I am told not to stress 🥺🙄 Thank you