The Prostate Papers—Chapter 3: Taking Stock

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.

Out of the Rabbit Hole

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.

You Have Time

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.

The Buck Stops with You

In addition to the recommendation from Dr. Scholz to take the time to understand the diagnostic and treatment options you have, in another video, he expanded on something I had already discovered—prostate cancer is complex. He says, “The buck stops with the patient in the prostate cancer world much more than it does in any other realm…”. He’s spot on. Remember, this is your prostate, your life, and the decisions that you make will ultimately be your decisions. That said, decision-making is best shared with your medical team. You need the best medical partner or advisor you can find. In a perfect world, you’d retain an independent advisor with no stake in the diagnostic and treatment choices. This optimal medical professional can offer advice and advocate on your behalf.

Unfortunately, independent medical advocacy is atypical, expensive, and usually not covered by insurance. In the real world, your urologist guides your medical journey, explaining the diagnostic and treatment options as you proceed. In many cases, if you opt for surgical treatment, your urologist is your surgeon. For most of us, working with a urologist is probably the best choice since it’s covered by insurance, and the vast majority of urologists have their patient’s best interests as their top priority. They’ll guide you in making good decisions. Self-advocacy remains important, and it’s perfectly fine to ask questions. In my case, I have a great urologist who is completely open to supporting me during this journey, independent of my diagnostic and treatment choices.

Ambiguity and Uncertainty

In the previous Prostate Papers episode, when I explained how I went down the prostate cancer rabbit hole, I introduced you to your new constant companions on this journey—the risks of incontinence and sexual dysfunction. Joining these miserable guys are their sidekicks, ambiguity, and uncertainty. As Dr. Scholz also points out, patients are “managing risk with no perfect options in this complex process of narrowing down options.” As much as we would like a straightforward test that confirms the existence of cancer and a well-defined treatment strategy, it doesn’t work that way with many cancers, especially prostate cancer.

Treatment choices (even diagnostic testing options) must be made based on evidence that has probabilistic outcomes. Statistics, not absolute clarity, drives decision-making. Patients who receive a diagnosis of an intermediate grade of prostate cancer (that means most of us) face a particular challenge.  You’re in the gray zone, and there is no single, easy answer here. You need to be prepared to hear, “It depends,” “Maybe,” or “It’s a toss-up.” It’s hard, but don’t let the ambiguity and complexity keep you from understanding your choices before you make your decisions.

Prostate Cancer is Big Business

I also noted in the previous Prostate Papers episode that diagnosing and treating prostate cancer is a big business. We can often look to our insurance provider to add financial considerations as we navigate this decision-making. The good news is that most insurance providers, including Medicare, cover prostate cancer diagnostic testing and treatment if they represent the “standard of care.” However, many newer diagnostic tests and treatment options may not be covered. Check with your insurance provider before committing to a procedure or a test. It’s your choice to pay out-of-pocket for the latest state-of-the-art testing and treatment, but be forewarned—it can get very expensive very fast. And be wary of hyperbolic marketing claims by some of these treatment clinics and diagnostic providers. Remember, prostate cancer is a business, and a big one at that.

In the next episode, we’ll enter the prostate cancer maze. It’s time to start considering all the diagnosis and treatment decisions we’ll make over the following weeks, months, and even years.

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