In this episode, Gary enters the prostate cancer maze when his PSA test results increase rapidly.

This is Gary Ebersole. I’m back with another chapter of The Prostate Papers. In this episode, we get serious about all the decision points and choices that men must make in their journey through the “prostate zone.” As always, I remind the listener or reader that I’m not a doctor. I’m merely trying to provide a guide that might help you better understand what’s on the path ahead. These are my experiences and may not reflect your situation.

To illustrate The Prostate Papers journey, I’ll introduce a metaphor I use to describe my travels through the prostate zone to visualize what it feels like to be on this trip. I sometimes think of myself as a package going through a maze of conveyor belts and chutes in a UPS sorting facility. As you ride along, you’re confronted with a sequence of decisions, often with several options and various outcomes. Depending on your decision at any given point, a gate closes, and you are sent down a chute onto a different belt. As much as you would like to return to the beginning of your trip and find a more pleasant adventure than dealing with prostate cancer, the belt only moves forward, and the ride continues.

Let’s start with the first decision most men think they must make—should I have my PSA levels tested yearly? In truth, your first decision is often whether to submit to a digital rectal exam (or DRE) by your primary care physician during your annual physical exam. Unfortunately, the evidence supporting using a DRE to identify early-stage cancers isn’t great. If the DRE is part of your yearly exam, welcome to the prostate cancer maze and hop onto the “watchful waiting” conveyor belt. Another, possibly even earlier, access point to this conveyor belt is when patients report lower urinary tract symptoms to their doctor. Google “prostate cancer lower urinary tract symptoms” to get the long list of symptoms. You can expect a DRE and a baseline PSA test if you report any of these symptoms. You’re also on the “watchful waiting” conveyor belt.

Back to PSA testing, which is a stronger indicator of possible prostate cancer than either the DRE alone or patients reporting lower urinary tract symptoms. Confusing for both patients and doctors, there is no consensus on prostate cancer screening guidelines. The American Cancer Society, the American Urological Association, the United States Preventive Services Task Force, and the National Comprehensive Cancer Network all have different (sometimes contrary) recommended guidelines. For instance, the USPSTF, a government-funded nonprofit organization, recommends against PSA testing for men over 70 (I’m 75). The ACS is more nuanced and recommends continued annual screening if baseline test results reach a certain threshold. The other groups are similar. There are very good reasons for this ambiguity. The risk of overdiagnosis (and overtreatment) for prostate cancer is high. Nobody wants the prostate cancer treatment side effects if they don’t have cancer. By the same token, nobody wants an aggressive cancer to go undetected. It’s a conundrum.

As I mentioned in the first chapter of The Prostate Paper, I entered the maze voluntarily (no symptoms) and jumped onto the “active surveillance” conveyor belt four years ago at age 71. My decision was based on several factors. First, I always believe it’s better to have information on which to base rational decision-making. Ignorance is not bliss for me when it comes to my health. Second, I have always been an active participant in my healthca

In this episode 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.

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In this episode 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 re