Bladder Cancer Group: Introduce yourself and connect with others

Good thoughts going g your way.

Dear gsali,
Thankyou for your response. Guess I’ll have some more answers this week from urologist & Neuroendocrine oncologist. Good luck with the cystectomy & ideal conduit. You sound very positive and that will make all the difference. Let me know how you go.

I was diagnosed with T1 non muscle invasive bladder cancer. I went through BCG unsuccessfully. Then my Dr. tired CG, also unsuccessful. I couldn't hold either of the treatments in for the recommended time. I am scheduled for a cystectomy & hysterectomy on September 3rd at Mayo with Dr. Lyon. I have opted for the ileal conduit and in preparation, I have been doing lots of research. It's amazing how many great websites there are.

I feel fine and am looking forward to my surgery. Keeping Collin Jarvis's 3 "P's" front & center, " Patience - Perspective - Perseverance"

Hi there,
My name is Janine from Australia. I was initially diagnosed with high grade urothelial (TCC) cancer in 2021. Limited to lamina propria & no Mets on CT. Treatment was TURBT & epirubicin instillation. Clear till Feb 2024 then diagnosed with SCC bladder limited to lamina propria again & no Mets on PET/CT. Treated with 4 cycles of Cisplatinum /epotoside protocol & then 4 weeks of One day Cisplatinum & 5 days external beam radiotherapy to bladder & full pelvis for 4weeks. . Clear again till now, latest PET/CT clear but now have cancer in situ (urothelial high grade) again. Which I was always aware would return. Waiting to see specialist NET oncologist & hear back from urologist. My ‘oncologist’ is vague re next step is and passes it on to urologist. Then I have to let oncologist know??? I pay $$$ for private care.
I was all prepared for cystectomy in 2024. I have read outcomes / overall survival for bladder sparing V cystectomy are about the same. But I think if I have two high grade bladder cancers & supposedly they haven’t spread pass the lamina propria the Cystectomy is a no brainer. I haven’t been given the choice. Would appreciate any advice & support re SCC.

still in the healing process on xarelto seems this may be slowing things down

I was the pioneer for bladder cancer in women!!! I was a man's disease! Rampant in returning soldiers that took a specific drug for pain! Diagnosed in 1977 by a lucky visit to a Doctor at Swedish in Seattle!! I actually said I have bladder cancer ( blood in urine!) don't I? He offered my a study which was BCG ( tuberculin vaccine). By the was I am a Pharmacist!. I was injected with it and skin scratched once a week for about 6 weeks. Your T cells kick in and fight i! I was cured!!!!!!! I did research and found I was taking lots of drug soldiers took. related to Excedrin. It contained a drug Phenacetin. It broke down to acetaminophen and a cancer causing drug!! I was responsible for a formula change! They knew!! Hired attorney and sued 2 drug companies. Now safe to take!!

@dianeh330 God bless you, Diane. Praise God for all His blessings!

Thank you for the welcome. I'm Diane , 69, I was diagnosed at 62 with bladder cancer. It was by accident it was found. No symptoms at all had a cystocopy. And found cancer. Removed aggressive cancer had the 6 injection of the BCG and just had another cystocopy done last Friday and I'm still cancer free I thank God every day.

@marklilly Hello, my husband was also stage 2 MIBC. This winter, he did 4 rounds of Gemcitabine/Cisplatin. On May 29th he had a radical cystectomy and is doing well. It’s a plus that you’re in good health! You get back on your feet sooner. You are in my prayers 🙏God bless, Rose

Thank you