Bladder Cancer Group: Introduce yourself and connect with others

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.

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"

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.

Good thoughts going g your way.

Stage 2 Bladder Cancer in the muscles
Have had 20 Radiation Treatments at Mayo Clinic in Richester MN
Have 2 NEPHROSTROMY TUBES
recently, learning how to wear and care for the tubes

Hello- 70-year-old male diagnosed in Aug 2024 with high-risk non-muscle invasive bladder cancer (NMIBC), initially presented with positive urine cytology and FISH but no visible lesions in all manner of imaging or cystoscopy (suggestive of occult carcinoma in situ)? I completed a full 6-week BCG induction course and tested negative 3 months later with cytology and Fish. I had my first 3-week BCG maintenance cycle, now 4 weeks post-maintenance and current cystoscopy remains clean, cytology showing atypia (BCG induced inflammatory response?) and FISH negative. All of the aforementioned was with my urologist. I have had an initial appt. with a urologic medical oncologist/hematologist with Dana Farber. I am to have another MRI Pelvis before the next visit and bloodwork. I didn't think to ask at the first appt. but would guess checking for possible ctDNA. Barring any change I am scheduled for cysto/cytol every 3 months and 3 weekly BCG every 6 months.

I have bladder cancer. Had 2 Turbts and am starting my maintenance of BCG

you are on a good path...I have had NMIBC since 2012...I am getting closer to removal as time progresses....once the urology guys have you in their care....they know more about your bladder than you do!!...the good part of NMI is it stays out of the muscle layer...!!...good luck....!!

Hello, I'm Brian, age 74 living in the Tampa Florida area. I'm very thankful to have found your group. I was diagnosed with bladder cancer about 2-1/2 years ago. Had two tumors removed via TURBT in 2023. Pathology graded them Ta/slow growing, non-invasive. I had 2-1/2 years of clear cystocopy visits until recently. Urologist did biopsy on very small suspicious growth and pathology came back Tis/CIS fast growing, non invasive. Urologist suggested BCG. I made the tough decision to leave Urologist and have records transferred to Moffitt Cancer Center here in Tampa. Tough because my Urologist and his entire staff were wonderful and very kind to me. My wife helped me make the decision (a Moffitt retiree.) I meet with the new specialist next week. I'm trying to prepare mentally for the road ahead and I know this group will help.

You didn't say why you switched urologist but if you were not comfortable, you should do what you think best. As for the treatment of BCG, I'm in the midst of it myself. So far, it is working. It is important to do the full routine. 6 weeks first, get scoped, then if it seems to have worked, proceed every 3 months with another 3 weeks of treatment, get scoped again, etc. for a year or more as you taper down. Look on line for the treatment schedule and go over it with your Doc. It can be uncomfortable and if you just can't tolerate it, lower dosage seems to be as effective per my doc...but stick with the full doses if you can tolerate it. Be hopeful and upbeat.