Friday, May 1, 2015

Knocking on my door

My first brush with prostate cancer was at age 58. My wife and I were about to move from Minnesota to San Francisco and I had quickly arranged my annual physical before leaving.  I was accustomed to "you are in great condition" reports from my internist so it was surprising to get the "I'm concerned about your PSA level" news.  

My PSA was 5. My internist had lost his records in a merger with a new medical group so I had no idea of my previous score.  I was alarmed, of course, but I knew very little about prostate cancer at that time. "Normal" for my age was considered anything under 4 so it didn't seem terribly high. I read up on prostate cancer and how common false positives were. I was still worried but my concern quickly turned to the consequences of a treatment  (if cancer would be found). The articles suggested that many men struggled with incontinence or impotence after the surgery.  Oh my god, I thought, I could spend the rest of my life wearing diapers.  And....what....no sex?  Our drive out to San Francisco was not pleasant.

I am a rabid cyclist and I had found a couple comments online suggesting that cycling could affect PSA levels. On arriving in SF, I stayed off the bike for a week and repeated the PSA test: 3.5.  Yahoo!  It was the bike!   Just in case, though I scheduled a meeting with a urologist at UCSF to get an expert opinion.  The urologist plugged the data into an application on her PC and got an answer on approach: active surveillance.  Whew...missed that bullet.

More details...
  • It is important to realize that, at the time of my first PSA scare, the practice of urology was under a barrage of criticism for over-treating prostate cancer suspicions.  Experts in other areas of medicine were advocating for eliminating the PSA test all together. The trend was (and still is?) toward more surveillance and less aggressive detection techniques (e.g., biopsies). This controversy is a real problem. If you have an aggressive form of the cancer the PSA test is, perhaps, the only way it can be detected early (stay tuned: enormous energy is being spent on the detection problem and new methods are emerging). If you have the indolent version of the disease (the majority thank goodness) over-treating can result in side effects (e.g., impotence) that are unnecessary.
  • When I first began to research prostate cancer treatments (primarily surgery or radiation) the nasty side effects often cited were incontinence and/or impotence. Those are words to strike considerable fear in any man's heart. Unfortunately, many articles were often vague about probabilities. The deeper I read about this (and the more personal experience I had) the more I realized they should not be described in the same way. Most men experience some incontinence after surgery.  But it is acute. Control comes back soon (weeks or months) in the vast majority of men. Only a very small percent of men suffer from permanent incontinence. Impotence is another story. Removal of the prostate (prostatectomy) is difficult without some level of damage to the nerves that control erections. Most men suffer some chronic reduced level of erections after a prostatectomy.
  • I don't know what app the urologist was using at the time of my first visit but the "active surveillance" recommendation surprises me a little now. The only data we had was my age (58), score (3.5), and the fact that my Dad had prostate cancer. That last fact doubled my chance of getting prostate cancer. Given that 1 of 6 men will have prostate cancer in their lifetimes my probability was now 1 in 3.










Pacing

It has now been over three years since I was diagnosed.  The first couple of years were filled with a lot of fear but also a lot of action a...