Now, my story. I have been an orthotopic neobladder woman since April 1999. About a year before the surgery, I noticed faint traces of blood on tissue after urination post-exercise. This occurred only every few months, and since I was perimenopausal (54 years old), I attributed that as the cause.
However, in September 1998 the amount and frequency of bleeding increased. At an appointment with my gynecologist in October 1998, I related this troubling bleeding, stressing to her that the blood appeared to be bright red, and didnot look like menstrual blood. Instead, she scheduled me for a D&C and hysteroscopy. The diagnosis was endometrial hyperplasia, and I was told to continue taking the hormones I had been prescribed a year earlier to regulate irregular perimenopausal bleeding. I asked if she would be catheterizing me to take a urine sample, and she said that was not necessary. I reiterated that I could not be certain if the blood was coming from my vagina or my urethra. She ignored any suggestion that the source was anything but vaginal. I continued to have intermittent bleeding, especially after walking for exercise.
In January 1999 I started to have an occasional clot of blood during urination. So I decided to determine for myself the source of the problem. After the next urination, I did not completely empty my bladder. Holding a mirror under myself, I then forced a huge clot of blood from my urethra. After recovering quickly from this shock, I called my internist, and was in her office within the hour. Her assistant catheterized me and I filled a beaker with urine so red that there was no need to test for the presence of blood. My internist arranged for me to see a urologist the next day, who sent me for an IVP and urine cytology.
I had an outpatient cystoscopy on February 2, 1999, which revealed a 2-3 cm growth. However, much to my dismay, the urologist did not do a biopsy, but pronounced it to be malignant, based on his experience. Within the next several weeks I had an abdominal and pelvic catscan, and in-patient surgery to remove the tumor on February 23. To my horror, the tumor had grown in 3 weeks’ time to 5-6 cm. A week later my urologist said that he had not been able to remove enough for pathology to determine whether the tumor had invaded the muscle wall, and that I would need to repeat the in-patient cystoscopy procedure. Panic-stricken by this turn of events, and sensing that I was dealing with a urologist who had graduated in the bottom-half of his class, I called my internist, relating this news, as well as discrepancies I had discovered in the pathologist’s report. She set up an appointment the next day with a young Johns Hopkins-trained urologist, who assured me that he would have a Mayo-trained uro-pathologist at a different hospital read my slides. This pathologist determined that the cancer was indeed muscle-invasive. On March 15 in an out-patient procedure my new urologist biopsied my urethra and ureters and placed ureteral stents
.Finally, after many more tests and donating two units of my blood, I had an 8-hour operation on April 8, 1999, creating an orthotopic neobladder from both small and large intestine. Concurrently, I had a complete pelvic exenteration and pelvic lymph node dissection (16 lymph nodes removed). On the day of discharge on April 15,1999, I received the good news that there was no cancer found in any of the parts removed, except for the bladder. The tumor was TCC, Grade III/III, Stage 2a (only microscopic invasion into the muscle wall). My neobladder is a combination "Hautmann- Miami-Indiana pouch". This is the good news. The bad news is that I have always remained hyper-continent, meaning that I am unable to urinate at all, and must catheterize all the time, 4-6 times per day, every day. As a result of the constant cathing, I have frequent neobladder infections, one of which invaded my kidney. Initially I was on a 6-month checkup schedule, but last November I was "promoted" to annual checkups–urine cytology, blood work, IVP, chest x-ray, and pelvic and abdominal catscan.
I will soon celebrate 2 1/2 years post-diagnosis. My prognosis is excellent, with my urologist giving me a 95% chance of "cure". Normally, he said it would be about 80-85%, but since I never smoked, my outlook is more positive. Still, I do not think I will ever feel cured because in researching neobladders, I encountered a Japanese study in which one person had a bladder cancer recurrence after 20 years. But I try not to think of that, and live one day at a time! And even though my neobladder does not work as intended, I am still happy with my choice, and would make the same decision again. I feel very lucky, indeed.