In Chapter 1 of The Prostate Papers, Gary explains how accelerating PSA scores sent him into the “prostate zone” and off for an MRI.

Welcome to The Prostate Papers, one man’s trip into the dreaded “prostate zone.” You might reasonably ask, “Whoa! Where did this ‘prostate papers’ conversation come from?” And you might also ask why I’m turning my very personal story into a public dialogue. I’ll address the second question in the next episode when I discuss the prostate cancer information overload challenge. For the first question, a little backstory to get started.

To PSA Test or Not

I’m like most guys in my mid-70s age group and am keenly aware of prostate cancer. I have several friends and family who have been treated for prostate cancer. It would be surprising at this point in my life not to have friends and family who have been treated for it. Like many of my peers, I have been on and off the PSA testing regimen. Over a dozen years ago, at the recommendation of my then-primary care doctor, I stopped taking PSA tests. From what I had read at that time, it made sense. Over-diagnosis with what were less accurate tools 15 years ago often led to over-treatment. My doc used the old medical cliché that, at my age, I probably already had very slow-growing prostate cancer and would be more likely to die from some other affliction. Watchful waiting (or active surveillance) was the order of the day.

That worked for me until 2020 when my new primary care doctor suggested we start PSA testing again. That seemed reasonable if we agreed to be wary of the over-diagnosis/over-treatment trap. All went well until earlier this year when my PSA scores started climbing. No panic. Watchful waiting, right? After all, PSA test results can be volatile and often reflect non-cancerous issues with the prostate, right? Well, after another test and another bump up in the PSA score, it appeared it was time for me to enter the PSA cancer maze. And it is a maze.

Into the Prostate Zone

A couple hundred thousand men in the U.S. enter the prostate zone every year through the same door I used—rising PSA scores.  It’s not the best indicator, as doctors repeatedly remind you, but it is a signal that can’t be ignored. I’m still early in the diagnostic process as I prepare this episode. I haven’t even had a prostate biopsy yet. Rising PSA scores could be BPH-related, it might signify asymptomatic prostatitis, or it could be cancer. It’s just too soon to tell.

I should note that I’m playing a dual role in this podcast series on The Prostate Papers. On the one hand, I want to be a dispassionate, helpful observer who finds researching and comprehending this subject compelling. I tend to define myself by my projects, and this is my latest project. Of course, on the other hand, I’m also the patient. What I’ll discover through my research and clinical experience will directly impact my life. As you listen to these episodes, you’ll hear these distinct voices. The observer will share what I am learning with listeners who might be traveling the same path. The patient might be a bit more pensive and introspective.

This series is not intended to be another “my-cancer” story. Well, I suppose it is, but I’m not looking for sympathy. If I do have prostate cancer, I fully expect to survive. At this stage of my diagnostic testing, the odds are very much in my favor. It’s a story about navigating this unique cancer and the medical-industrial complex in which it operates. I hope to explain the diagnostic and treatment process that makes prostate cancer so challenging for patients.

The Prostate Papers: First Observations

Before we close this episode, let me offer my initial observations on my reaction to entering the “prostate zone.” First, when you are referred for your first non-PSA diagnostic test, you become obsessed with learning more. At least it was that way for me. My second observation feeds the first—there’s a boatload of information out there for you to obsessively google and doom scroll through. The third observation is that you are not alone. Millions of men are living with prostate cancer, support groups abound, and family and friends will be there. It’s a large community.

Join me in the next episode of The Prostate Papers when I explore whether we have a TMI problem with prostate cancer diagnosis and treatment. Is there too much information? In subsequent episodes, I’ll dig into the complex process of diagnosing and treating prostate cancer.

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