Bladder Cancer Group: Introduce yourself and connect with others

76 yr old female first cancer diagnosis
I’m new to this having been diagnosed with Invasive High grade urothelial carcinoma in January 2025. First Turbt 1/19/25, second Turbt 2/20/25 and scheduled to start BCG treatment 3/20/25. I am very fortunate to have a great team supporting me and am hopeful that BCG will be effective and well tolerated. Looking forward to gaining more insight as time goes on.

@1608hope, waiting is hard. I'm glad that you have an appointment with a specialist to rule out cancer or something else serious going on. The symptoms your describe do not necessarily indicate cancer, but they do require further investigation. Have you had blood in your urine? Is it discolored?

I am new comer here, I suspect I have bladder cancer, about a month ago I started have frequent urination, I ask my pcp referral to a urologist, but earliest I can get is second half of March, now I have more bladder cancer symptoms showing up, extreme fatigue, back pain, I searched online seems like typical symptoms for bladder cancer, What should I do?

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.

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

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.

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.