Much of what I experienced is described in peculiar and irreverent detail in my book "Assume the position: one guy's journey through prostate cancer." It's available through my website (all proceeds go to Prostate Cancer Association Ottawa).
The first reaction upon hearing you have cancer is, "Egad." This is followed by a string of much worse words. But it's not like my car's fuel pump sprung a leak and can be easily repaired. I've learned medicine is an inexact science, that I had to place my complete trust in perfect strangers whom I considered nerds while I was out playing road hockey. Now these people were going to stick their mitts in my gut to save me.
I survived the surgery and was lucky - no further treatments and minimal long term side effects. I don't know if that's the norm; all I know is that had my family doctor not had my PSA tracked for a few years, this might not have been discovered. I could be dead. Or worse.
Prostate cancer, I've also discovered, can be treated if men would learn to emote rather than be remote. I understand that these days it's acceptable for men to tear up. Finally. But I guess it depends a lot on the answer to this question: what's your life worth to you or anyone else?
Little of note has happened since the last update. My PSA is now being checked annually but I continue to earn (get? be rewarded with?) what the doctor calls an undetectable PSA. Here in Ottawa, Canada, the original benchmark was using numbers. But then it was decided to just call it undetectable if the PSA was so tiny as to be of no consequence. Frankly, any rogue cancer cell is enough for me to consider it a consequence, but that's not what the medical people think. It may very well rear its Gorgon head in 20 years, but what the heck, something will if it doesn't.
I try to maintain a healthy lifestyle - I am a long distance runner and ice hockey coach/instructor. I still have a very strong affinity to potato chips. My guess is that won't affect the PSA. Next PSA check is Feb, 2011, at which point another undetectable score would sort of make me "cured," like the ham I am. Life continues to be a joy, no matter what.
Yesterday (Jan. 19 at 8 am) was the 6th anniversary of my prostatectomy. I go for my next PSA test in a week. Sadly, we have no control over test results and it'll mean another week or so of anxiety before I meet with my urologist in Feb. I can be hopeful or I can be scared. I can be anxious or I can be blase.[PSA Anxiety was mentioned in the January 2012 Yana E-Letter ]
I choose to worry about other things instead, such as what's the next good movie I'd like to see, or how I can get my ice hockey team to improve its performance. "Ain't no sense worryin' 'bout things you can't control, cause if you can't control em, ain't no sense worryin," according to a former pro baseball player. Wisdom personified.
I am healthy. Well, not entirely. I have a nagging hamstring injury (I'm a marathon runner) which is impeding my training regime right now. But this is likely unrelated to a six year old prostate cancer issue.
Today, I continue to rely a bit on pharmaceuticals to deal with erectile dysfunction. Such is life. I don't much like it but they also help with the libido. I tinker with three types and some are more effective in different doses than others. None has made me go blind.
I wear dark underwear and black running shorts (except in Canadian winters where people in shorts are deemed crazy) because there's still a tendency for drippage under exertion such as when running or skating. It's not a lot and a minor annoyance.
I've been lucky compared with friends in the local association, Prostate Cancer Canada Network Ottawa. I have my health , my energy, and a positive attitude. I'm not sure which led to which, however it doesn't much matter. Life's grand, even minus a prostate.
It's the first week of February. The seventh anniversary of my prostatectomy slid by practically unnoticed. Until this year, I'd made an event of it. I texted family to ask for congratulatory messages. I took a few moments each January 19 at 8 am to recall my trepidation - okay, abject fear - about being slid from the gurney to the operating room table. It didn't have the same panache as a soldier recalling a battlefield moment, yet it was my own battlefield moment and it produced a darn nice scar, which has since nearly vanished, in case you're wondering.
But this year, I did nothing. I awakened that morning - and forgot it was that morning. It was only the next day, the 20th, that I remembered the anniversary. So instead I inwardly celebrated the seventh anniversary of my first post-op bowel movement. One doesn't forget such things.
In a week I will get the result of my annual PSA test. So far, it remains undetectable (or 0 for those who prefer to keep score). My urologist said last year he'd see me annually and at ten years, he'd boot me out for good. Nothing personal, he added, but I'd be cured. Yet I still harbor a hint of uncertainty. I've seen a few men in our local association whose PSA scores were next to nothing and suddenly, years later, prostate cancer re-appeared. I can't control the biology though. If there is a maverick cell rampaging through my gut, no amount of bland herbs or dark chocolate or even delicious red wine will stop it. All I can control is my reaction and ability to cope.
Meanwhile, down there, I still get a bit of drippage, particularly during or after exercise. But literally drippage. As in a few drips. It's a mildly annoying inconvenience that has resulted in my cornering the market on black underwear shorts. As a long distance runner, I do want my legions of fans to see that the moisture on my shorts is from sweat, not post-op leaking. Then there's the little ED issue. As we age, things don't spring as they used to anyway. Plus, I understand a radical prostatectomy does tend to shorten one's member a trifle. So, while my surgery was successful and the nerves spared, there remains a reliance on wonderful pharmaceuticals to keep everything happy.
I've done a lot of experimenting with four types of these drugs. They work in varying degrees depending on dosage and type. For instance, one of A goes nicely with one of B, if taken X hours apart. C gives me a slight headache and is short-lasting, but works best. D makes my face turn a bit red, like a perennial blush. Mind you, in the dark, does it matter? Tinkering with these is also an annoyance. But I've learned we can live with just about anything and adapt accordingly. The larger issue is the cost of them. As generic versions roll out, the cost is dipping a bit, yet these remain rather pricey. I get samples from a specialist at the hospital and along with my limited drug plan, I manage fine. I've also discovered - from that same specialist - the vast number of men suffering from ED in one form or another, and not just as a result of prostate cancer. So now I worry about supplies of the stuff.
I tried one new type last year. It melts in your mouth, like a small lozenge. The effect was mildly successful, though I didn't give it a real chance in conjunction with another type. That will come (oops, bad pun).
As far as libido is concerned, there's no doubt it's enhanced by some of these pills. But, as my specialist said and has been well-documented, the game is played mostly with the mind.
A new neighbor moved in next door in September. A couple of months later, we were chatting on the driveway and he said we had something in common; neither of us had a prostate. His surgery was ten years ago with no side effects at all. And he doesn't seem to worry about it in the least.
Actually, neither do I. Well, I am for another week, till I get the next PSA result. Then I'll march off to the pharmacy to refill a Cialis or Viagra prescription and head home to check if my stock of black underwear is sufficient. From there, I'll head out in a lovely Canadian winter for a long run.
Timing in life, I'm told, is everything. Just three weeks ago, my surgeon of choice informed me that my PSA remained undetectable. That's now eight years of zeros. In ice hockey parlance, it's the equivalent to a string of healthy shutouts, we call them. Our appointment was short and more chatty then medical. A young resident was in the room, smiling at the friendly repartee between patient and doctor. And why wouldn't it be upbeat? I'm as free from the nasty little cancer buggers as one can get. Two more annual visits, the doctor said, and he will "unceremoniously" boot me from his directory. "Boot away," I said.
Each year on the anniversary of my prostatectomy, at precisely 8 am when it the knife began its journey, I'd held a private ceremony in my head to commemorate the occasion. This year though, my wife and I were on a cruise. On the day of the anniversary, we were in the Bahamas and I just plain forgot. It was when we came into port the next day I was reminded with a text from my daughter. Such is what happens when years pass uneventfully.
Little has changed since last year, for those keeping track of my saga. My book "Assume the position: one guy's journey through prostate cancer" is down to its last few copies. Every now and then I get an order from somewhere on the planet. The plan is to turn it into an e-book in the coming months and update the ending. (You can still order one through richardbercuson.ca.).
Still an active member of the support group Prostate Cancer Canada Network (PCCN) Ottawa, I've now met a few men who've had the marvelous da Vinci robotic surgery. What a gorgeous way to deal with the disease. Would that it was around in 2006. One fellow asked me if I had regrets about the surgery or that I could have waited. Regretting is a mug's game, I say. It's over and done. Move on. Sure, it would have been so much easier to have had the robotic surgery. But I stand by my choice and deal with the minimal after-effects as just a new standard of life.
Let's look at those. Last year I wrote there was a wee bit of drippage as a result of exertion or cold weather and some liquids. Black underwear does the trick and there's never enough to cause me embarrassment. I'm a runner so I'm sure to empty the bladder frequently and am careful about what I drink and when. As for E.D., while the surgery went off without a hitch, not as much was known even in 2006 about the importance of post-surgical treatment to prevent long term E.D. I'm fortunate to live in a city where one of the world's experts on the subject works and is my doctor. So do I still have a problem? Yes, a little. But pharmaceuticals do the job nicely. Another new standard of life.
I know I'm luckier than most. But I still maintain that one's positive approach to life, no matter the circumstance, can often make the difference. Now if you'll excuse me, I need to don my black undies and head out for a run - in the snow!
Since last we met, I had my ninth post-prostatectomy PSA. Still undetectable. I'm lucky. There's no other word to describe it. I haven't stopped riding bicycles and crushing my gonads on that seat. My diet still includes a fondness for red wine and the occasional dessert delicacy. My running regime, though shorter due to a nagging hamstring issue, continues apace. I remain a positive person. So I've done nothing and don't think nasty thoughts about my prostate cancer experience such that one could draw a link, however flimsy, between my state of mind and test results.
I know plenty of men with no such luck. What's difficult is that there's not a damn thing I can to help them, except perhaps listen when they vent.
My urologist promises that next January, on my tenth anniversary, if my PSA remains undetectable, he will boot me out. For all intents and purposes, he says, I'd be cured. Not cured like a ham. Cured in the flimsy medical definition. Do I believe it? Does it matter?
This is one thing out of my control. In the meantime, onward I go. Stay tuned for next winter's episode.
Up here in Canada, where ice hockey rules, when a hockey (ICE hockey, as if there's any other kind) team or goalkeeper isn't scored on, we call it a shutout. Zero goals against. Zero, as in nothing.
That's where I am. My 10th annual visit to my urologist last February was, he said, my last. In the medical world, ten straight years of undetectable PSA meant I was cured, in a manner of speaking. Not cured like with a ham. I mean cured like there's no prostate cancer cell big enough or mean enough right now to do me any harm. I am indeed lucky. A good friend with a heart condition has a touch of prostate cancer but can't have surgery because of his heart. He's in active surveillance mode these days as his disease just sort of sits there wondering what to do next. So far, it's doing nothing while I try to put his mind at ease. I still find it tough to relate to those like him who don't have the straight forward result I've had.
The urological surgeon dismissed me. He'd promised the year before that if I got a 10th shutout, he'd usher me from his office , never to be seen again. Of course, he was smiling when he said it. I am what he calls a positive outcome.
There we are. Do I believe in cures for cancer? Not really. Do I worry it might come racing back in some other place in my body? Not at all. I have no control over that and there's nothing to be gained by fretting. Life moves on.
Like I said, I've been lucky...
It's coming on 12 years since the surgery. Whenever I meet someone who's been recently diagnosed and is in the same state of awful fret I experienced, I try to reassure them that treatments for the disease now make what I faced seem like medieval medicine. We know more and can do more, almost regardless of the state of the disease.
Would I have chosen a different approach in the late fall of 2005? It's easy now, in retrospect to say yes, but in reality I don't know and prefer not to think of it. What's the point? I chose surgery at a time when there were fewer viable options and I was terrified.
I remain lucky. At a recent get together of parents of an ice hockey team I coach here in Canada, I was selling the last few copies of my book "Assume the position" (visit richardbercuson.ca - only e-versions are available). One mom looked at me and said, "You're a cancer survivor," as if my visage hid the horrible truth of my past. "Yes," I replied, "Lucky me." Which stopped the conversation in its tracks, thankfully.
I suppose I will always be that person. Still, I remain ever thankful for the superb support from my Ottawa friends and the medical people I dealt with. Life moves ahead. There remain the last vestiges of small issues: ED requiring medicinal assistance plus some dripping during exertion, but nothing that dark underwear can't deal with. A small price to pay really.
Richard's e-mail address is: richard AT richardbercuson.ca (replace "AT" with "@")