My story begins 8 years before I had bladder cancer. I started having annoying symptoms: needing to urinate more frequently and having these twinges that felt like when you gotta go, but only lasting a second. I'm a pediatrician, not especially knowledgeable about bladder cancer since it's just not seen in kids… and even now, after having had bladder cancer, from reading the posts on this forum it's quite clear there are lots of folks here who know a lot more about bladder cancer than I do… but, since I am a physician, I was able to do my own urinalysis and send a culture to the lab. Cultures were always negative, but the more symptoms I had, the more blood I had in my urine. Since my father had a benign polyp removed from his bladder and had annual cystoscopies, I figured I ought to get it checked out. BTW, I'm certain that my father's polyp was benign because I got a copy of the biopsy report when his urologist insisted he needed annual cystoscopies even when he was too far into the throes of dementia to understand what was being done to him. So maybe there's a genetic component to my bladder cancer, but my identical twin had a cystoscopy after my diagnosis, and he was clear. Anyway, back to the story.
I went to a colleague for a cystoscopy and he found nothing. For 8 years he gave me a variety of explanations that didn't make a great deal of sense to me and treated me with antibiotics and antispasmodics, specifically, Hytrin. My symptoms came and went without regard to treatment. There were many times I wondered if it was in my head, but when I had persistent symptoms I always had blood in my urine, and in between the blood cleared. My urologist never suggested another cystoscopy, and I was relieved. Now what happened next still mystifies me, because I can't figure out if I had some sense that my bladder spasms were more persistent or more intense, or if there was some kind of divine intervention, but just before Thanksgiving 2000, I asked my urologist, "If I always have symptoms and always have blood in my urine, how will I know if there's anything to worry about?" He answered that we should get a urine cytology. I spent all of Thanksgiving worried about the results, but didn't say a word to my family. Finally the results came in – sheets of atypical cells, but no cancer. My urologist assured me that the atypical cells didn't mean anything. I was relieved… And then 3 weeks later I passed a clot.
It was now Christmas vacation and two of my kids were home from school. My daughter had her boyfriend with her as well. I scheduled a cystoscopy. While doing the cystoscopy my urologist muttered, "It's no more than a grade 1 or 2!" but he never said the word "cancer." I never asked, and I never understood that that's what he was thinking. He scheduled the TURB and called my partner to tell him to change his vacation plans. I drove myself home. By the time I got there I had to pee so badly I ran into the house past everyone waiting for news and yelled the word "Polyps!" as I headed to the toilet. That was when I learned about Detrol. My bladder was so irritated I was going every 15 minutes. I called my urologist who prescribed Detrol, and within 30 minutes I was a normal human being again.
I had my TURB just before Christmas. I was miserable when I came out of the surgery, but they gave me my Detrol, and things got better really fast. Then the nurse came in and tried to explain to my wife how to remove my catheter the next day. My wife couldn't even look at it. I mean, give me a break. I'm a physician, and even if I wasn't, where does the idea that a man can't remove his own catheter come from?!? So we went home, and I felt relatively OK. I was still groggy from the anesthesia. I had to sit on the arms of the couch because sitting all the way in the couch yanked on the catheter. I had to sleep on my back since I couldn't roll over with the catheter attached to the overnight bag. And I prayed that the cat wouldn't discover the catheter or bag and decide it looked like a great toy.