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Facing Cystectomy

6 years 7 months ago #46041 by sara.anne
Fred, I thought you deserved your own topic, so I moved your post "slightly."

You are fortunate to have the medical background that you do, so that you can understand and evaluate what you are told. And you are also wise to move to a comprehensive cancer center when things got complicated.

Unfortunately, you have identified one of the many major problems with bladder cancer. Yes, it can, in many cases, be very treatable. However, it can, and does, come back again and again in some other cases and then the choice is "get rid of it."

Wish I had some really potent advice for you. Just wishing you the best.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 7 months ago #46039 by fbrace
I am soon to be a 60y/o white male, Family Practice Physician Assistant. I smoked a lot for about 15 years earlier in life, but quit smoking 30 years ago. Outside of being overweight, I have been relatively healthy prior to this.

Original diagnosis was diffuse CIS 2/2013, and I underwent BCG X 6 with minimum side effects. Resection 6/2013 showed continued cancer now high grade T1 disease. I needed a second biopsy in August to determine muscle invasion, yes or no. There was none, but there was granuloma around the left UV junction, so then I underwent treatment with mitomycin X 6.

Mitomycin caused almost UTI-like symptoms part of the way thru treatment, but nothing more. Next biopsy was in 12/2013 and came back with chronic cystitis only, so that was a great Christmas gift to be "cancer-free". But there was significant scarring to the left distal ureter causing hydronephrosis, so I went home with a nephrostomy tube draining my left kidney, which I wore for the next three months.

I went to Fox Chase Cancer Center because my local urologist did not feel comfortable addressing the scarring to the left distal ureter. We performed another cysto with biopsy 2/21/2013 and was found to have recurrent T1 disease on the posterior wall on my bladder.

My cancer has never been very localized to allow for a simple resection of a tumor.

As I have exhausted further therapies we are scheduled for a radical cystectomy/prostatectomy with ileocecal urinary diversion. This is now "scary" stuff as I was led to believe by my local urologist from the start that this was "very" treatable with a significant cure rate.

Fred Brace, PA-C, DFAAPA
Dover, DE

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