Like many bladder cancer patients, I was shocked when a urologist gave me the diagnosis. Cancer wasn’t for me; it was for other people. And bladder cancer? I didn’t know anything about it, but some quick research confirmed I had no obvious risk factors. All moot, though. My wife Eva and I needed quickly to come to grips with the next steps to save my life—if not my bladder.
My urologist referred me to a veteran surgeon at a highly regarded cancer center within commutable distance from my home. A physician friend living in another city asked around and came back with the very same name. After going online to check the surgeon’s credentials, which were outstanding, I made an appointment.
My new surgeon went into the bladder and scraped out tumors additional to what the urologist had resected. Although none of the recognized tumors were determined to have invaded the bladder’s muscle—a key indicator of the need for surgical therapy—my surgeon explained that, nevertheless, a confluence of factors clearly necessitated removal of the bladder and, consistent with standards of care, removal of the prostate as well. I felt total trust in my surgeon and spent very little time pondering the necessity of this radical cystectomy/prostatectomy. Further discussion, however, revealed that I, as the patient, was now given the notable task of determining my urination process absent a natural bladder.
My surgeon described the two ‟diversion” options that he offered to replace the bladder’s crucial function. The first was the ileal conduit, constructed from a section of the intestine to transport the urine to the outside surface of the abdomen, where it would be captured by a wearable storage bag. The second option was the neobladder, also using a section of the intestine but fashioning it into a pouch that would hook up to the rest of the urinary system to mimic the natural bladder and flow the urine out through the penis. My surgeon also briefly mentioned the Indiana pouch, placed near the skin and emptied through a catheter inserted by the patient. Since he didn’t offer that third option, I did not inquire further.
At the time of my diagnosis, I was 65 years old and in reasonably favorable general health. As such, my surgeon told me I was a ‟good candidate” for the neobladder, which would require more complex and lengthy surgery than the conduit and, probably, also a longer rehabilitation. Although we touched on risks associated with the neobladder, I perceived a gentle nudge toward that option. Still, the choice was left entirely up to me and, remarkably, I would be allowed to change my mind right up to the time of surgery. And even if I chose the neobladder option, implementation could not be guaranteed. Biopsies conducted during the surgery would need to ensure that key associated tissue was cancer-free; if not, the problematic tissue would be removed, and the conduit would be created instead. So a patient may go under anesthesia expecting the neobladder but wake up with the conduit.
My gut feeling leaned strongly toward the neobladder. Hey, this doesn’t sound so bad—I won’t need to wear a bag, urination will be close to normal, what’s not to like? But a subsequent visit with a urology ‟fellow” told a different story. He emphasized the complications that my surgeon had tended to downplay. I would have to ‟learn” how to urinate, and some patients are unable to void the neobladder completely, which can lead to infections severe enough to require re-hospitalization. Ultimately, a continuing failure in voiding would be remedied only by self-catheterization—certainly not a pleasant prospect. And continence problems, by definition not an issue with the ileal conduit, would exist with the neobladder at least short-term and possibly long-term. I was handed a video disk related to the ileal conduit and sent on my way. I recall my words to Eva on the drive home: ‟neobladder, schmeobladder.” I began looking at the conduit as the more straightforward and less risky preference.
I popped the video disk into my computer as soon as I got home. The video opened with a youngish woman gardening and going about her everyday life. Clearly this was a promotional piece putting a positive spin on the ileal conduit, but I couldn’t help focusing on the subsequent scenes of the woman managing the bag, replacing it, and cleaning her ‟stoma”—the end of the conduit brought through the skin. Now, what did I know, but I had envisioned something like a garden hose linking the stoma and bag, all very neat and clean. The video showed a less glamorous picture that I just couldn’t shake. Paired with my ‟neobladder, schmeobladder” reaction, this meant that for at least a week I was consumed with the thought that neither of the choices available to me would result in a satisfactory quality of life. And that was on top of general anxiety about the impending 5- to 7-hour surgery and, of course, the cancer itself.
Tormented by the no-win dilemma and feeling pressure to decide quickly, I tossed and turned in bed one night, unable to fall asleep. It was about 2 a.m. when the notion entered my head, as if from an external source, that my negative thoughts were destructive and I should instead decide from a place of optimism. From the beginning of all this, it had been clear that the best possible outcome would be a well-functioning neobladder. When I returned to that original vision, it simply became the way to go. A palpable sense of relief washed over my body, passing from my toes upwards to my head. I fell asleep immediately and slept soundly the rest of the night.
A reader who is skeptical of the account above can join me in that, as I am not a spiritual person. But what is certain is that when I awoke in the morning my choice of the neobladder option was totally firm, and I never looked back.
As soon as I gained my senses after surgery, I felt for the telltale temporary catheter and was assured that, yes, I now had a neobladder. The period of rehabilitation wasn’t easy; I was in the hospital for eight days and didn’t get back to my office job for three months. But I was voiding the neobladder successfully and fortunate to suffer neither infections nor other serious complications. Since then, when asked about my experience with the neobladder, I respond, ‟It doesn’t work great, but it does work.” And my last annual checkup indicated a continuing cancer-free status after three years.
My purpose in sharing my story is neither to promote the neobladder option nor to present assurances that complications will never occur with whichever diversion someone selects. I simply wish to emphasize the importance of an optimistic outlook. Step by step, you will make the decisions you need to make, you will do your rehab, you will participate actively in your treatment, and you will grab every opportunity to resume a normal, productive life.