BC 12/29/03 – Deep Muscle Invasive TCC 1/15/04

TURBT 1/15/04 High Grade and tumor invades the deep muscle. Around the end of June 2003 I had blood in my urine, except at the time I did not believe it to actually be blood (long story). I had no other symptom and the blood in my urine only showed up ocassionally, until in mid-December when I passed large clots along with my urine in addition to the blood being present. I knew at that time it was definately blood and called my doctor the next day, after labs and an abdominal ultrasound (on 24 December I called and was told by my doctor I had a bladder tumor) ordered by my doctor I was seen by a Urologist on 29 December 2003 at which time he (urologist) did a cystoscopy and told me it was a malignant tumor, which he knew because of it’s appearance (he showed the image on the screen to me).  We set the date for me to have a TURBT(15 Jan 2004), in the meantime I searched the Internet for as much information as I could find.  I had an Abdominal CT scan two days prior to my TURBT which showed some enlarged lymph nodes and identified two filling defects in my bladder, my surgeon gave me this information prior to my procedure on the 15th.
After my surgery on the 15th I spent most of my time in search of information concerning treatment options, some I found on my own and other information was provided by my surgeon and another urologist and additionally an oncologist whose concern was for the enlarged nodes in my pelvis, but most specifically the largest of them. This time seemed like a very long period to me, but was in fact only about three weeks before I made my decision, which was to have a Laparoscopic pelvic lymphadenectomy and if the nodes were negative to continue on to a Radical cystectomy and complete hysterectomy.  After all the frozen sections were negative for my surgeon to build me an Orthotopic neobladder. Actually that decision changed in small ways right up until the day prior to surgery, but reflected careful consideration by all.
So on 17 February 2004, the procedure mentioned above is what was done, and although my recovery probably wasn’t what any surgeon would like to see in his patient (I had a migraine for three days post-op and barely was out of my bed), I did as far as I’m concerned quite well.  I didn’t really have anything more than what I considered moderate discomfort from my incision, but having been so slow to get moving I felt quite weak after everything and it took some real motivating by others to get me up and moving.  I was in hospital for twelve days, had been npo for about nine days, but once I got moving it went quite well after that.
My biggest medical problem since surgery has been incontinence, that is another long story that I won’t go into right now, but I think I’ve actually found a solution that is going to make a huge difference for me in this quest for continence.  One of my biggest frustrations has been the lack of information concerning women with orthotopic neobladders, and especially those who have or had a problem with incontinence.
Any women with similar problems feel free to email me , I’m interested in hearing from you.  
The best news of all is what my surgeon told me while I was still in the hospital when the pathology report came back, his words to me were, "Although I cannot promise, I feel that this surgery will most likely leave you cancer free, and you probably will not need chemotherapy at all".

Lou Graham Author