Noninvasive bladder cancer has a high recurrence rate, about 50 percent within the first five years. Mine came back within six months. Over the next four years, I had five recurrences and one borderline, always with multiple small tumors. We stayed with BCG treatments, adding another immunotherapy after two years. I believe those treatments and my follow-ups – every three months – kept the tumors from progressing past Stage I. But we lived with the fear that the next tumors could be later-stage.
My urologist felt strongly that my bladder should be removed before tumors became invasive and broke through the bladder wall. He referred me for a second opinion at a large teaching and research hospital. The bladder cancer specialist agreed with my urologist: my bladder had to come out.
He performed a radical cystectomy with lymph node dissection, removing my entire bladder. A partner in his practice then began reconstructive surgery to create a “neobladder” replacement using a small segment he removed from my small intestine.He stretched and shaped the piece of intestine to form a pouch, connecting the top to the ureters running from the kidneys and the bottom to the urethra, just like a real bladder. If all went well with the neobladder, I’d be able to urinate the normal way after an adjustment period.
It was a huge decision, but my urologist really put us at ease. He clearly described the risks and benefits, answering all our questions. He explained that it’s a complex surgery with no guarantees. Also, a neobladder can stop working. After a lot of discussion and prayers, we said, “Let’s go for it,” and I’ve never had a single regret.
A year later, life was pretty much back to normal when the unthinkable happened. Clarence, my rock for nearly half a century, was also diagnosed with bladder cancer. His was Stage IV, and he was gone in less than six months. Until something like that happens, you don’t realize how much “family” you really have. Besides two wonderful daughters, their husbands and my three adorable grandkids, I was supported by a loving church family and school family. I also had a close friend to confide in and my faith to comfort me.
The neobladder worked for four-and-a-half years. Since then, I’ve needed to “self-catheterize” three times a day. I insert a small disposable catheter into my urethra to drain the urine in my neobladder into the toilet.
Today, I volunteer two days a week transporting patients at a nearby hospital. Recently, a patient mentioned that she prays her cancer goes into remission. So I told her I am a cancer survivor myself. She said, “You had cancer, and you’re pushing my wheelchair down these long halls?” I laughed and said I get in my steps without paying a club membership.
Many people think their life is over when they hear the word “cancer.” I am living proof that it isn’t.