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.

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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”

Life After Radical Prostatectomy: 6 Months Later

Okay, today marks six months since having my radical prostatectomy on 4 January 2011, and I thought that I would provide a general overview of what life has been like in those six months.

Elements of this page will be very graphic in nature (talking about incontinence and sexual function), so if you’re not a fellow prostate cancer patient, you may just want to hit Google’s “I feel lucky” button.

The Early Days

I was off work from 3 January to 14 February, and might have been able to return sooner had it not been for the little episode with the infected lymph fluid that sent me back into the hospital for five days in late January.

Because the lymph fluid built up around my bladder and squeezed the piss out of it (literally), my bladder control wasn’t exactly where I wanted it when I returned to work.  Fortunately, it was good enough not to have to wear the full Depends diapers, and only the protective pads.

In late February and March, any residual pain from the surgery or drain tubes was gone and I resumed most of my normal activities–walking, stairs, driving–without much of an issue.  I was typically going through two or three pads a day depending on how active I was or just whether or not it was a good day or bad day for me.

That’s one thing my surgeon told me to expect–a roller coaster ride of good and bad days.  I didn’t let myself get too discouraged on the bad days because I knew that the trend line was going up–my good days kept outnumbering my bad days more and more.  

The other thing that he reminded me was that recovery times vary person-by-person.  One person can be dry in a matter of weeks, and another can take a full year.  I’ve been in the middle on that.

Incontinence

Stress incontinence was an issue early on.  Chances of me spring a leak were pretty good when squatting, lifting groceries from an odd angle, sneezing, or coughing.  In the very early days, I found that even standing too quickly could cause a leak.

And then there are just the, “What the hell was that?” episodes.  I can recall just standing in the grocery store talking to a coworker when I felt a little squirt just hit the pad for no apparent reason.   Go figure.

None of the leaks were large in volume.  In other words, I wasn’t peeing in my pants.  Most, I would estimate, were less than a teaspoonful (or perhaps a tablespoonful on some occasions)–enough to warrant having a bad to avoid a wet spot in my trousers.

Throughout all of that, I found myself running to the bathroom more frequently than I did before the surgery.  It wasn’t that I really needed to “go,” rather I think it was more psychological at first.  I just wanted to make sure that I wouldn’t have an accident.

Part of it was physical, too.  Up until rather recently, there was a near-constant urge to urinate.  That made for frequent trips to the bathroom even though my bladder was relatively empty.

Interestingly, in mid-May, the leaks pretty much stopped (save the stress incontinence) and I decided to stop wearing the pads. And I’ve done so with only one small incident–a sneeze surprised me before I could tighten my pelvic floor muscles and cross my legs.

By the first week of June, the near-constant urge to urinate went away, although it came back for a couple of days last week.

Traveling

By April, I was able to resume traveling for fun and work.  I took several lengthy road trips and my first flight.

Interestingly, there are some logistical and security concerns when traveling with pads.  First, you have to remember to bring them.  Second, getting through airport screenings with something shoved down your underwear is probably something you don’t want to do unless you want to have an intimate experience with a TSA agent.

For my first flight, I actually wore a pad as I drove to the airport.  I went to the men’s room after checking in, removed it, and then proceeded through security.  As I went through security, I explained my situation to the TSA agent and asked what would happen if I had to wear the pad through security.  He said they’d pull me into a private room and conduct a search there.  

After clearing security, I went to the men’s room, pulled a spare pad out of my carry-on bag, and put it in place for the flight.

Sexual Function

As far as sexual function is concerned, we may as well call it sexual dysfunction at this point.  Nothing’s happening in that department yet.

Remember that, because my tumor was so large, the surgeon had to take one set of nerve bundles, so that greatly reduced my possibility of regaining normal sexual function without some sort of assistance.

The doctor started me on the daily 5 mg Cialis pills when he pulled the catheter out.  We stopped them when I was readmitted to the hospital for my infection, and then resumed them on my return home.

Shortly after returning to work, my vision started getting pretty blurry.  Knowing that one of the side effects of Cialis is blurred vision or–worse–out-and-out blindness, I stopped taking the pills.  Saving my vision was more important than getting a boner.

I think that I may have overreacted some, because a visit to my optometrist revealed that I had perfectly healthy eyes.  Perhaps it was just getting back in front of a computer under miserable fluorescent lights that caused the blurriness.  Still, I have yet to resume the Cialis.

While I haven’t been able to have an erection, I have been able to generate enough excitement to have orgasms.  Orgasms after the prostatectomy are much different than those before.

First, there’s the obvious fact that there’s no ejaculate.  All of that plumbing was disconnected or removed during the surgery.  Interestingly, I find the orgasms to be more intense after the surgery.  I find myself much more hypersensitive to touch during or immediately after.  That’s something that I wasn’t expecting.

Summary

So it took me from January to the end of May to become “dry” again as far as the incontinence was concerned.  Wearing the pads was a minor inconvenience and they certainly beat the alternative of having cancer and dying.  As my doctor reminded me, not everyone recovers the same, so be patient.

As far as the sexual function is concerned, I’ll be patient on that.  A fellow survivor told me it took him 18 months to regain function, and he had both sets of nerves left behind.  Besides, I’m not in a relationship right now so it’s not as though that’s an immediate need to satisfy a partner.  If I do find someone, then this will take on increased importance.

Are there days that I wish I had my prostate back?  Of course.  But I’m thankful that I’m around to have those thoughts.