A Decade Living with Prostate Cancer

One decade. 522 weeks. 3,654 days. 87,696 hours.

That’s how long I’ve been living with prostate cancer since being diagnosed on 11 November 2010. Of course, the operative phrase is “living with.”

The diagnosis was terrifying. The treatment decision was excruciating and exhausting. The surgery recovery was longer than expected with some complications along the way. The long-term side effects have been what were advertised at the beginning.

On the positive side, there were 54 months of undetectable PSA results to indicate the surgery had done the trick. Or so we thought.

When my first detectable PSA test came in five years ago, I was even more terrified and panicked than when I was initially diagnosed. It meant that my first line of defense had failed. Now I had fewer options to control or rid me of the cancer available to me.

My doctors convinced me that there was no need for immediate panic and that we could and should monitor my PSA before considering any action. My PSA fluctuated up and down, but had a slow but steady upward trend.

As my PSA continued to climb—passing several markers that are normally used to consider starting salvage radiation therapy—I continued to do nothing. I’ve been pretty steadfast in my reluctance to start zapping without knowing where the cancer is, and even some of the best new imaging techniques won’t pick up the cancer at my PSA levels.

With a PSA doubling time of four years, I’m comfortable with that decision. Heck. I’m still here five years after that initial detectable PSA reading, and ten years after my initial diagnosis.

We may find out a little more about my future direction next month when I go for my next PSA test just before Christmas. As I’ve learned (albeit slowly) over the last decade, don’t get too worked up about the results until you have them in hand. It just doesn’t do any good to speculate about the unknown. January will tell me whether I can continue the status quo or it’s finally time to take action.

If you asked me ten years ago when I started this blog (to keep family and friends informed in my pre-Facebook days) that I would still be doing this ten years later, I would have said you’re nuts. But here I am.

I’ve tried to inform and educate others about prostate cancer along the way, and to give insights to the newly diagnosed as to what you may encounter two, three, five, or ten years down the road. All the guys I spoke with pre-surgery had, themselves, only been less than a year out from their own surgery date. They had no long-term post-surgery insights to offer to me.

I’ve tried to inject a little dose of reality to those who, just like me, gleefully declared themselves to be “cancer-free” after a few undetectable PSA tests. “Not so fast.” My story is a reminder that there can be unexpected plot twists, even in the later chapters.

Along the way, I’ve met some wonderfully supportive men who have been through their own journey—some just virtually and some in person. Sadly, three of them have lost their battle with prostate cancer and they’re sorely missed.

It’s been a decade of living with prostate cancer. Living with. Let’s hope that I’m still around to write the blog post, “Two Decades Living with Prostate Cancer.”

Month 80 – PSA Threshold for Salvage Therapy Survey

Okay, please indulge my personal curiosity. This is going to be an interactive post—there’s a pop quiz for some readers.

I’m 22 days and 8 or so hours—give or take—from my next PSA test. (But who’s counting??) And anyone who’s been diagnosed with prostate cancer already knows that there’s a ton of infuriatingly conflicting and confusing information about PSA out there.

Because my own post-surgery PSA has been creeping up in the last two years—meaning some sort of salvage therapy may be in my future—I’d like to ask other prostatectomy patients:

  1. Below what PSA level does your medical team say PSA is “undetectable”?
  2. At what PSA level does your medical team say that biochemical recurrence has occurred?
  3. If you had biochemical recurrence, how long after hitting biochemical recurrence was it before you began salvage therapy?

To make it easier for you to respond, I’ve created a short survey for those who have had a prostatectomy and had their PSA return after surgery. It’s certainly not a scientific survey, but it will be interesting and perhaps educational to see the variance in the responses. If nothing else, it will be entertaining. Click the link below to take the survey:

PSA Threshold for Salvage Therapy Survey

Seriously, having this information available when I get my next PSA results may help me with the next conversation that I have with my medical team, so I thank you in advance for helping me understand what may be next for me.

I’ll share the results in next month’s post which will be shortly after I receive my PSA results from my 2 August 2017 blood draw.

I’ve been blogging for the last 80 months to maintain my own sanity, educate myself and others, and to increase prostate cancer awareness. I certainly don’t do it for recognition. I have to admit, however, that I was surprised to see my blog listed on a Top 50 Prostate Cancer blogs list by Feedspot.

I don’t post this to feed my ego (much), but by clicking on the image below, you’ll see the other websites and resources that are available as well.

Article: Radical revision of treatment for prostate cancer could extend life

Here is a very interesting and perhaps controversial article about shifting how we approach the treatment of prostate cancer:

Radical revision of treatment for prostate cancer could extend life

Month 57 – Overcoming Self-imposed Barriers

Before jumping into the meat of this month’s post, please remember that September is Prostate Cancer Awareness Month.  Spread the word.  Take time to learn about prostate cancer risks, diagnosis, and ever-differing treatment options from your physician or from other great resources.


Where to begin?

Physically, things have been going pretty well for me, but for the last month or so, I’ve been struggling more and more with the social and emotional impact of my radical prostatectomy.

Most men who are old enough to be diagnosed with prostate cancer are already in a relationship and have been for years.  They’ve got a supportive partner who, hopefully, stands by their side long after the treatment has been given.  You sign up “for better or for worse,” and you stick it out.

But not me. I was single when I was diagnosed, and I’m still single today.

Before I get into why this has been bugging me so, a bit of context is in order.

If you’ve taken the time to read my biography in the About Me section, you already know that I’m gay. I was a late bloomer who put himself in circumstances that made it difficult to have a relationship as a gay man.

I spent 12 years as an officer in the United States Navy, long before “Don’t Ask, Don’t Tell” was enacted.  Having a relationship while on active duty just wasn’t going to happen. I was too afraid of losing my career if anyone ever discovered that  was gay.

When I left the service, I landed back in my home state of Illinois for my master’s degree, and then in a small town of 6,000 people in rural southeastern Indiana working in a manufacturing management role for 17 years.

Given the recent news about gay rights issues in Indiana, you can understand, too, why I remained closeted there. Too many of my coworkers–mostly management–expressed homophobic views that made me wary of being open about myself.  I perceived that there were real risks to my career if I came out.

After my prostatectomy, things at work were changing to the point where I dreaded getting out of bed and heading to the office.  Having been diagnosed with cancer, I realized tomorrow isn’t guaranteed, and if I wanted any shot of finding someone to share my life with, it wasn’t going to happen in Indiana.  It was time to act.

So in January 2012, a year after my surgery, I bought a house in the San Diego area (I had been stationed there in the Navy and fell in love with it); I quit my job in March; made the move in April; and sold my Indiana home in May (not exactly the normal sequence of events for such a major transition).  I had been given a second chance, and I was going to take full advantage of it.

My best-laid plans of finding Mr. Right hit a snag–a psychological snag.

In my mind, I threw up this impenetrable wall concerning sex after a prostatectomy.  I viewed myself as “damaged goods”–difficulty getting and maintaining an erection and dry orgasms–and simply didn’t know how to sell that to a potential partner.  True, sex is not everything in a relationship, but it can and should play an important part.

That concept of being damaged goods paralyzed my efforts to hit the dating scene.  “How do I tell them?  What do I tell them?  When do I tell them?”  In my mind, I couldn’t move forward until I had answers to those questions.

Thankfully, I have a dear friend who, I swear, knows me better than I know myself.  She gave me a cross-country slap upside the head from her home in Maryland that knocked some sense into me.

The only way that I’m going to get answers to those questions is through my own personal experience of getting out there and trying to date.  Each guy will respond uniquely and differently than every other guy, so there’s no sense trying to come up with a one-size-fits-all approach.  Some will want to know on the first date; should things progress so far, others may wish that I told them before taking things to physical intimacy (“Oops!  Surprise!”); and others will be thankful that I won’t be ejaculating all over their brand new 600-thread count Egyptian cotton sheets.

It’s time to break down the remainder of that psychological barrier and get out there and see what happens. I’m sure that there will be ups and downs with rejections happening more often than not, but that’s okay.  It’s time to move forward with that second chance I’ve been given.

Life After Radical Prostatectomy: 48 Months Later

So it’s been four years since my radical prostatectomy.  How am I doing?

Continue reading “Life After Radical Prostatectomy: 48 Months Later”

Life After Radical Prostatectomy: 42 Months Later

So it’s been three and a half years since my radical prostatectomy.  How am I doing?

Continue reading “Life After Radical Prostatectomy: 42 Months Later”

Life After Radical Prostatectomy: 36 Months Later

So it’s been three years since my radical prostatectomy.  How am I doing? 

Continue reading “Life After Radical Prostatectomy: 36 Months Later”

Life After Radical Prostatectomy: 30 Months Later

So July 4th marks 30 months since my radical prostatectomy (and 30 months of independence from cancer!).

Where am I at in this journey?  Well…

Continue reading “Life After Radical Prostatectomy: 30 Months Later”

Life After Radical Prostatectomy: 24 Months Later

So it’s been two years since my radical prostatectomy, and I think that things have plateaued for me.

There really hasn’t been any significant change in my status since writing my 18-month update.

Continue reading “Life After Radical Prostatectomy: 24 Months Later”

Life After Radical Prostatectomy: 18 Months Later

So it’s been almost 18 months since having that pernicious prostate plucked from my pelvis.  For those who have read the entire blog (thanks!), you’ve been following my status all along.  For those new to the blog, here’s kind of where I’m at in key areas.

Continue reading “Life After Radical Prostatectomy: 18 Months Later”