Bladder Cancer Group: Introduce yourself and connect with others

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.

@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

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

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.

you are very kind.

@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?

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.

Only a preliminary idea from my urology team, for now. I meet with oncology on March 5th. Urology thinks it will be chemo for 3-4 months, then cystectomy, prostatectomy, removal of lymph nodes, and possibly urethra. Yes Mayo has been fantastic. I feel like I'm in good hands.

Good luck to you! I hope all goes well and you have a smooth recovery.

I am very lucky. It all started with weeks of cranberry colored urine and a bit of back and forth with doctors, tests, scans, cystoscopes and such. My bladder cancer was found early and the second surgery may remove it all with a continued routine of BCG infusions to prevent recurrence. I have high grade papillary urothelial carcinoma. I’m 75 and am up and about with no pain. As the optimist said when he fell off the building, “I’m okay so far. “ It still is quite a shock to be diagnosed with cancer and witness my body deal with all that’s going on, and then listen to the mind processing it all. Kudos to all here. We’re all in this together, taking one day at a time.