In Chapter 3 of The Prostate Paper, Gary comes out of the prostate cancer information rabbit hole and takes stock of what he has learned.

Gary Ebersole again. I’m back with another report on my journey into the “prostate zone.” As I mentioned in the previous episode, I’m not a medical professional, and I’m not giving medical advice. My objective with these podcast episodes is to share the experience and knowledge I have gained with our listeners. Make your decisions based on your research and the advice of your medical team.

In this episode, I’ll take a break from my nonstop research and take stock of what I’ve learned. First, a personal sidebar. My journey began eight weeks ago when my second PSA test results in two months were posted to my medical portal. Damn, that was my first thought. Another big jump in two months (20%) after the 33% increase over the previous year. Not good. I had just entered the prostate zone. For me, that didn’t mean rushing to my urologist and demanding immediate treatment. I wanted more information. He ordered an MRI scan, and the intervening three weeks gave me plenty of time to understand my situation better.

My research became the catalyst for The Prostate Papers. Prostate cancer was more complex than I had thought, and perhaps what I learned over dozens of hours of online research could offer some guidance to other men entering the zone. So, here we are, eight weeks later, and I still haven’t had a prostate biopsy. What, you may say? No biopsy yet? Perhaps the best virtual advice I received during my research was listening to a YouTube video featuring Dr. Mark Scholz, a well-known medical oncologist in Los Angeles. He’s specialized in managing prostate cancer (not treating) for the past 30 years.

In this video (https://www.youtube.com/watch?v=aotF2SPzCmU), Dr. Scholz tells patients to “Go slow…do your research…talk to a lot of people …give yourself time to process the complexity of the situation”. The essence of his advice is simple—you have time. Yes, you have cancer—the big ‘C’—and that creates an incredible sense of urgency. Your first response is, “I want it out, and I want out now.” But stop, take a deep breath, do your research as Dr. Scholz says, and talk to your doctor. You’ll discover two important things. First, some forms of prostate cancer are what is called “indolent” and grow very slowly. Second, even if your cancer is considered high-grade or aggressive, it still grows slowly compared to many other cancers.

You certainly have a few weeks, even longer, before committing to a diagnostic and treatment pathway. Google the phrase “How quickly does prostate cancer spread?”. You’ll find many credible sources that support the premise you have time to understand your disease and your choices. Whatever you do, don’t choose to do nothing. That would be stupid. You wouldn’t be at this point if there weren’t some solid prostate cancer signals. Listen to what these signals tell you, and if your doctor recommends active surveillance, follow their advice for regular PSA testing and, in some cases, routine MRI testing. You are in the prostate zone. Deal with it.

Back to my biopsy status. I’m glad I took the time to research prostate biopsies. No, a prostate biopsy is just any old biopsy. There are several approaches that I plan to explore more deeply in the next episode when I take listeners into the prostate cancer maze. I’ll explain what I discovered and how it impacted my biopsy path.

In addition to the re

In Chapter 2 of The Prostate Papers, Gary goes way down the prostate cancer information rabbit hole.

Welcome back to one man’s trip into the dreaded “prostate zone.” Before I start, let me remind listeners that I am NOT—repeat—NOT a doctor. I’m just a reasonably well-informed patient, and I’m sharing what I have learned in the hope that other folks entering the “prostate zone” might find it useful. Do NOT treat anything I say as medical advice.

I closed the first episode with a simple question—is there just too much online information on prostate cancer for a reasonable person to discover and process? The classic answer—and my response—is “It depends.” For almost all of us, at the outset of our research, the amount of information can seem overwhelming. Just getting started can be a challenge. Googling “prostate cancer” gives over 412 million results. But is it too much? For many men, a fair answer is “yes”. TMI. Too much information. That’s what highly skilled, experienced doctors are for. A good doctor can guide you down this path to a successful outcome. You don’t need to enroll in the Google School of Medicine to be a good patient.

Other folks eagerly head down the prostate cancer “rabbit hole.” There can never be too much information. One more query to post, one more paper to read. I’m one of them. When we “data hounds” go into our doctor’s office, we’re ready for a serious discussion, not a lecture. In my case, after a follow-up PSA test came back showing yet another significant bump in my score, my urologist recommended we proceed with diagnostic testing, beginning with an MRI scan.

In the three weeks before the test, I went down the prostate cancer information rabbit hole. Way down the rabbit hole. I spent dozens of hours clicking through long lists of Google search results. No surprise, there’s almost an endless supply of information scrolling across your screen. Equally unsurprising, the quality is all over the board. You can understand why doctors seldom look forward to seeing patients who have consulted with Dr. Google. Some may come in with a preconceived notion of their diagnosis and even have a treatment plan.

If you choose to arm yourself with information available online, let me offer some advice. First, hone your search skills. The value of the returned results depends on composing good queries and comprehending and filtering the flood of information. As you drill down, your queries should be using more specific keywords. Second, select your data sources carefully. As we all know, information on the web can range from gold to garbage. I’ll drill down on the sources in a moment. Third, check the dates of the published information. Prostate cancer diagnostic tools and treatments have made significant progress in the last ten years. There is decent quality information that is a decade old, but try to focus on research and reports from the last five years.

So, what online data sources do I think are good? Even though it’s far more challenging to process scientific research reports, they can offer some of the highest-quality data. In this project, PubMed Central from the National Institute of Health became my new best friend, but I wish I had paid more attention during my stats class in college. Processing medical research reports demands a basic understanding of statistics. And having enough information to understand the research context, its language, and its relevance is essential. It’s not always easy. That said, I read them anyway.

For most people, the best resources are medical information websites curated by large clinical and resea

In the first episode 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.

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.

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.