Bladder Cancer Group: Introduce yourself and connect with others

@suka1, how did the appointment with the second urologist go? Did they offer additional treatment options?

Hi. I've just been diagnosed with bladder cancer. Aggressive and invasive. 51 yrs old. I have a new Urologist that found a dark spot on my bladder while I was in the hospital. (So much for my Urologist of 4 yrs) Long story short, I've been referred to another Urologist in the same practice that I meet with Monday. The Urologist that referred me said that it was best for me to have my bladder removed. I'm still in shock with cancer, let alone trying to function in life without a bladder.

Thank you for your response. Unfortunately I got the UTI from the tech inserting the catheter for BCG and catheter fell out before he put BCG in. He reinserted the same catheter. 2 days later after BCG I got Proteus UTI. 2 rounds of antibiotics and an E Coli too. Now I’m clear of infection. Have started on DMsnnose 1 tsp a day and cranberry pills. So far so good. I just had a clear scan and clear cytology. So now I start the 3 month clock of feeling relief and then a week before next scan the fear takes hold. I feel I am living 3 months at a time. I don’t know if anyone else feels this way. The doctor wants me to try to continue with maintenance BCG in 6 months after my bladder settles down from the UTIs.

Welcome, @archer72. The fear of recurrence is understandable. You're not alone in holding that fear sometimes top of mind and other times lurking in the background. I encourage you to start a new discussion about coping with the fear of bladder cancer recurrence.

Have you heard the term scanxiety?
- Scanxiety: How did you get through scanxiety https://connect.mayoclinic.org/discussion/scanxiety/

Makena, you mention persistent UTIs. How long ago did you stop BCG? Might that reduce the risk of UTIs? Will you start any other treatment?

Hi many thanks for advice. Yes I feel as if my walk as dropped in my back passage. When I urinate there seems to be soreness and pressure As if I want to empty my bowels. But I don’t really. Want to. When in bed my feet get so hot and I sweat in between kegs it’s hard to get to sleep. I am now getting up to urinate 4/5 times a night. Only 2 months ago it was only once. Bear in mind I drink up to the time I go to bed. I am going this week for a ct scan. Then the week after they want to explore my bladder and do a biopsy. Of bladder. It’s a shock coz I am a very fit person. It’s hit me like a ton of bricks. Thanks for your advise it seems right. I will post the outcome. Of diognistics. Thanks Neil. .

@portugalcass it sounds like you are following a good plan of treatment. They are looking and not seeing cancer which is good. The next step of a CT scan might show more, but planning on a biopsy under anesthesia would most likely give you an answer. The CT scan may also show any anal problem as well. My husband had bladder cancer and went through all these same tests to get a diagnosis.
How soon are you having these things done?

I should add that the doctor believes the cancer is directly related to my exposure to Agent Orange while in Viet Nam. The VA has given me a 100% disability as a result.

Good morning from Northern VA. I was diagnosed with stage 3b bladder cancer in Jan '22. I underwent 8 rounds of chemo in April and May '22 and a successful radical cystectomy in July '22. I have been clear at all subsequent visits and the doctor recently moved my visits to annual.

Hi am new. Am struggling to hold my water 4weks ago I saw a little blood in my urine. I have over the last year been sweating a lot in between my legs ans burning and tenderness when urinating. I can’t hold me urine in for long. I got antibiotics of my doctor for a week but still suffering I have had ultra scan and all clear I went to hospital for a camera thru my penis and no sign of tuna only said that my bladder was red. I am now going for a CT scan and urologist as booked me in for a biopsy under anaesthetic I am wondering is this the best procedure. As I am not currently passing any blood in urine. As I am drinking more water now rather than tea. Also my anus gets sore every other day. My stools look healthy and have been tested and cleared of bowel cancer. Appreciate feedback. As this ad just come on in the last 4weeks. I am worried. Neil. a

Hi I’m Makena. 70 yo TA Grade 3 cancer survivor. Been 3 years since diagnosis and treatment with BCG ongoing. Just recently stopped BCG due to adverse effects. I’ve had one recurrence of small low grade tumor which was fulgrated. Biggest problem is recurrent uti and living in fear from one cystoscopy to the next. I never feel at ease.