Bladder Cancer and me

Once my bladder tumor was found and we were planning surgery, I told my wife that, should it later be determined things were worse because I did not seek help early enough, then we could blame it on kidney stones … well, along with my tendency to self-diagnose and to put off seeing a doctor.

Therein lies the purpose of this post. I want you to not make my mistake. If you see blood in your urine, do not procrastinate, do not assume it will be OK … see a doctor.

If you take that to heart, you need read no further. Below, I intend to talk about what’s happening and give you a first-hand report about my experiences. Maybe it will help you prepare. Maybe it will give you questions to ask your doctor. Maybe it will convince you to make that appointment.

Give me a sign!

There’s a proverb I love. Record-setting rains were flooding a town and people were encouraged to leave. One man told the sheriff’s deputy that he was OK, God would provide.

As waters rose, firefighters came by in a jon boat and tried to take the man. A larger boat showed up by the time the man had scrambled to his roof. Eventually, a Coast Guard helicopter team tried to pluck him from atop his house.

To all, he refused help and repeated his mantra, “God will provide.”

Finally, he drowned. When he appeared in heaven, he asked, “God, why did you let me drown? I just knew you would provide.”

God said, “I sent a cop, two boats and a helicopter. What more did you want?”

That crossed my mind in the days after we learned I had bladder cancer. I had seen the signs but ignored their message. I thought I knew better.

In December 2004, I had a kidney stone removed (they said it was too large for me to pass). The following summer, in July 2005, a stone had to be removed from my other kidney. Don’t quote me on this, but I remember the urologist saying something like 70 percent of people with two kidney stones will likely have more.

Associated with kidney stones is blood in the urine. Therefore, with the above statistic in mind, I was not too surprised when in the winter of 2010-11 I noticed my urine was rather dark.

Routine tests by my physician during a checkup on Aug. 15 indicated an infection and he put me on an antibiotic. I returned for a follow-up test in a couple of weeks and they were still concerned about small amounts of blood. That’s when he referred me to a urologist.

On Oct. 5, 2011, I met with the specialist. He’s about 10 years my senior and an incredibly friendly guy, easy to talk to, and he even listened. He also found blood in my urine and accepted that I was probably correct about stones, since I had a history, but he scheduled a CT scan just so we could make sure what we were dealing with.

Briefly interrupting the story, this is a good point to stress you should not consider any of this medical advice. I’m just passing along my experiences.

The scan was the afternoon of Oct. 12 at a local radiology center. The process was incredibly quick and easy.

I had an appointment with the urologist a couple of hours later and we looked over the images. Sure enough, there was a stone in my right kidney, but it was very small and he was not concerned. As I was about to ask him if that might cause the blood, I noticed an off-color area lower in my body. At the same time, he began zooming in on the spot, saying the radiologist was concerned about this apparent mass in the bladder.

That was the moment when my life made a course correction.

The doctor said he’d like to go in and take a look at it. In a matter of minutes, numbing solution had done its job and the doctor ran a scope up my urethra, past the prostate and into the bladder.

I could see everything the scope saw, transmitted onto a monitor. I thought the procedure was amazing. We got a good look at the bladder walls and the doctor pointed out the ducts that carried urine from the kidneys. But the object of our search was easily spotted, sticking out like a golf ball on a tee.

Taking action

The urologist explained the tumor was what is known as transitional cell carcinoma, presumably because it originates on the inner lining of the bladder, known as transitional cells. If its growth were solely within these cells, its removal would be comparatively simple. Things get a bit more worrisome if the tumor invades the lamina propria, which he described as connecting tissue between the inner wall and the muscle wall. The greatest fear would be if the tumor reaches the muscle wall. From there, removal is more problematic and it is possible for the cancer to reach other parts of the body. (Again, this is simply my understanding.)

With a ton of new information spinning in my head, I left the doctor’s office after giving them permission to schedule a transurethral resection at the local hospital. I was left to explain to my wife that it was likely a minor procedure that would remove the tumor and everything would be OK. I would go back to the doctor every few months to again be scoped and let him look for any new growths, something they say is a distinct possibility once you’ve had one. The idea would be to catch any new ones in the earliest stage and remove them promptly.

Of course, I also told my wife that morning I was sure I only had a kidney stone.

Surgery went smoothly except for the fact I had to go all morning without coffee, but a wonderful nurse fetched me a cup soon after I came to. While shaking off the drugs, I became aware of the catheter, which I knew would be there.

The idea, as I understood it, was that they want to leave the bladder mostly empty while the surgical wound – the scrape in my bladder wall – healed. The catheter was connected to a bag hanging by the bed. The nurse explained to us how it worked and, prior to discharge, placed a smaller bag on the catheter and strapped it to my leg to make travel easier.

I really had no pain issues. I took three or four pills over the next couple of days in hopes it would help with what I called “discomfort” rather than pain. I’m not sure they really affected it much.

The surgery was on Tuesday. I returned to the doctor’s office Friday morning for the removal of the catheter. It wasn’t until then I learned the catheter had a “balloon” inside to keep it from sliding out. Had I known that, I would not have worried about it quite as much.

For a while, I had a burning sensation while urinating. A couple of times, I passed small, bloody lumps, which I thought shouldn’t be surprising.

A difficult part of the healing process was to not exert myself. The doc ordered me off work for three weeks. I felt fine, so I had to be vigilant about not picking up something heavy or sitting up abruptly in bed. I just kept reminding myself how nasty it would be if things ripped open inside.

On Nov. 8, 2011, I met with a specialist in Houston who deals extensively with bladder cancer. He reviewed my information and recommended a repeat surgery to make sure we’ve removed the entire tumor. In fact, he called it standard protocol to have a second surgery between four and six weeks following the original.

I returned to my original urologist for that surgery on Tuesday, Nov. 29, six weeks after the first operation.

Things were pretty much a repeat from the first surgery, but recovery seemed to move a little more slowly. My wife offered the insight my body would find it a little more difficult to bounce back just six weeks following the first surgery.

That Friday, we returned to the doctor for the removal of the catheter, but even more pressing than the tube running into my bladder was the pathologist’s report. Did we get it all? If it’s inconclusive like after the first surgery, will we just proceed with treatment or perform yet another transurethral resection? Is there any chance they would start talking this early about removing the bladder?

My doctor saw us in the waiting room. (It’s a small, informal two-physician practice.) He made a bee line to us.

“I’ll give you details later,” he said, “but I couldn’t make you wait any longer. We found no more tumors. We got it all.”

To briefly outline the next step in my case. Four weeks following the second surgery, we began treatments with BCG – Bacillus Calmette-Guerin, a vaccine that has established a nice record of inhibiting the growth of new tumors in the bladder.

It was to begin with six weekly treatments, where the agent is inserted into the bladder and held for two hours. Following the first six, the treatments would be performed less and less regularly.

I had received four treatments with nothing but minor side effects, but shortly after the fifth I experienced tenderness and swelling in one testicle. The urologist diagnosed it as epididymitis, an infection of the epididymis, a gland into which semen pass from the testicle to mature. What he did not know was why it was infected. He did say this happens in only about 1 in 200 cases; made me feel special.

Tests indicated the source of the problem was likely the BCG and he put me on a 90-day drug regimen to combat that problem. We decided to try the BCG after a two-month wait, but the effect was the same. My doctor did not want to cause further problems and felt good about the six treatments achieved. We decided to forego treatments and simply monitor the bladder.

That’s where we are. I’m currently going in about every six months and the doctor will use the scope to have a look around. Most recently, at two and a half years, everything still looked good.

Remember why I’m writing this? The idea is to get across two messages. One, you should see a doctor if you find blood in your urine. Two, if there’s a problem and you catch it early, the odds are better that you’ll like the results.

So, here’s what I consider a success story.

A woman I know who is familiar with my experience said she was concerned about blood in her urine.

“Remembering what you said,” she told me, “I saw my doctor.”

As it turned out, the blood apparently came from kidney stones. However, the CT scans that revealed the stones found a mass on an ovary.

Being post-menopausal, the decision to remove the ovary was an easy one and everything went well. Plus, they determined it was benign!

Thanks for reading. Share a link to this page with anyone you love. If he or she is not really interested, there will be appreciation for your concern. But, maybe, it will provide the incentive to follow up with a doctor about an issue he or she has been ignoring. THAT, my friends, is my guiding force in sharing my personal details with the world. Share it, like it, tweet it, pin it … take a chance on saving someone’s life. God bless you and those to whom you entrust your medical care.

And, one more time, what’s our lesson? If you see blood in your urine, check it out!