Karen
Like other women I complained to my gynecologist of blood in my urine and after having uterine causes checked, was eventually referred to an urologist. My tumor was discovered by cystoscopy and I was referred to a surgeon at Sloan Kettering in NYC.  The pathology following the TURB showed that the tumor was muscle invasive and I learned I would have to lose my bladder.  The presurgical CT showed spread to lymph nodes up into my trunk.   I entered a sequential 6 month chemo protocol and had 5 cycles of doxirubicin and gemcitabine over 10 weeks, and then 4 cycles of paclitaxel, cisplaten and ifosamide over 12 weeks.

After a 6 week treatment respite, I had the surgery to remove my bladder, lymph nodes and uterus; an internal continent reservoir was constructed from a section of my bowel.  I have the Indiana pouch and insert a catheter through an abdominal stoma to void.   I never smoked, though I live with a smoker, and recently learned my father had bladder cancer.

I returned to work 3 months after the surgery and am fully back in my life.  I have become a mentor to other bladder cancer patients at Sloan Kettering and actively participate in the Bladder Cancer Webcafe listserv. I have also been giving talks to medical and community groups about the issues and special risks of late bladder cancer diagnosis for women, have written a book about my cancer journey called “Surviving Cancer via Email.”  I also patented a stoma dilator for urostomy patients.