Bladder Cancer Group: Introduce yourself and connect with others

Hello Bobbie @deidre77 . I also reported your lost post so we will see if anyone can find it for you. You might have to replace it yourself but let's see if the moderators can help.

I’ve been diagnosed with the earliest stage hopefully. It’s a recurrence from a decade of being NED. At that time I had early stage and a turbt. Dorothy

@littlemom

Hi Anne,

Nice to meet you. I was surprised you were able to read my entire message since when I went back in to ensure what I had written was OK, for some strange reason it was abbreviated and only part of the first sentence was there. I then requested some assistance but since this is the weekend, there will be no response yet.

If you were able to read my entire message, then how come I was not? Very strange indeed.

Thanks for saying "hello".

Here's wishing you, I and all our fellow sufferers a year filled with hope.

Best wishes,
Bobbie

Hi everyone,
Thanks for all your stories and advice. Urologist has changed Antibiotic to Amoxicillin 500mg TDS for 10 days. (Plus a repeat for another 10 days if still have S&S of UTI) Not to worry about checking for infection (MSU) whilst on antibiotic and back to Oncologist to see if happy to have BCG whilst on antibiotics. I did query about the efficacy of BCG whilst on antibiotics, as I know it reduces the treatment success. He said it won’t make a difference. (Yes sure??) Interesting he said my UTI was hospital acquired. They used NaCl to clean area prior to catheterisation & not Chlorhexidine 1%. I am to insist on them using chlorhexidine from now on. So frustrated with all the blunders so far with private hospital. I am tempted to get on top of this UTI before restating BCG induction., but may take weeks. Worried at the speed high grade CIC has spread in 3 months. Developed 2 more areas from Aug to Nov on Cystoscopy. It’s now January…Urologist also said he was not keen on Radical Cystectomy after all my pelvic radiation in 2024…high risk & potential for complications & poor quality of life post surgery.

Hi, Bobbie. I’m Anne

Hello good people!

Please let me introduce myself: I'm Bobbie, an 80 year old female (<

This is Mike. I've been getting treated for low stage low grade bladder cancer for over 4 years now. Finished my full BCG treatments. In the past 4 years i had trouble getting past the 3 month scope without a new small tumor showing up. 3 or 4 reocurrancee happened and the were all removed thru the scope. This past fall i made it past 1 year for the first time. Then they called me a week later and said their was irregular in the urine sample. After a ct scan nothing was found. So onward we go. Good luck with your battles all.

CIS is a complex disease to fight. Often only fully visible with blue light TURBT.

Intravesical chemo (GEM/DOCE) is common. ICI with(out) chemo is exceedingly rare (new and prohibitively expensive).

The longer you have CIS the more risk.

Good luck!

Totally agree, but NET oncologist backed up my Oncologist with treatment so far. Every time I see my oncologist I ask what next step is if BCG doesn’t work. There is no sign on PET/CT of reoccurrence of SCC so far. High grade CIS now in 2 areas of the bladder. Having difficulty with BCG with reoccurring UTI despite antibiotics. Oncologist says he will next try intravesical chemo & if that doesn’t work a different immunotherapy. Maybe my Urologist wants to discuss Cystectomy with me on Friday…

Any variant is typically far more risky than regular UC. In the US many MDs would suggest RC in such a scenario. Especially when it is papillary+CIS. Small cell is recognized as one of the most aggressive forms of bladder malignancy. It accounts for less than 1% of all bladder cancers and is characterized by a high propensity for early systemic metastasis. So 6 month PET seems odd. Every 3 months seems more appropriate with cytology (AUA/NCCN/EAU).