The Prostate Papers—Chapter 4: Entering the Maze

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.

A Maze of Chutes and Belts

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.

PSA: To Test or Not

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.

My Trip Into the Maze

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 healthcare decisions. I rely on the advice of medical professionals, but I’m always well-prepared for a visit to a healthcare provider. Third, I knew I wouldn’t panic if my PSA scores started climbing. Concerned? Of course, but in control of the situation. Finally, I also believed I had the capacity to deal with the complexity of cancer diagnosis and treatment decision-making. However, honestly, I didn’t expect it to be this complex, which triggered my decision to publish The Prostate Papers.

So, no matter where you entered the maze, you’re now on the “active surveillance” conveyor belt, moving along steadily. In some cases, “active surveillance” tends to be more proactive than just “watchful waiting.” More routine PSA tests and even regular MRI scans are often part of the protocol. If all goes well, we stay on this belt until our final curtain call. We’ll probably see slowly increasing PSA scores in what doctors call the “gray zone.” It’s quite common as we age.

Down the Chute to Another Belt

In the meantime, if your annual PSA test does return with a significant jump in your score over the previous year, you might be referred to a urologist. Even if your primary care doctor decides it’s too soon for that referral, a retest is in order. PSA test results can vary. It could be a bad test, but it’s not likely. You might have gone on a long bicycle ride the day before or been sexually active. Either can increase your score, so it’s off to the labs for another test.

If you’re lucky, the increase was a fluke, and you get to spend another year on the “active surveillance” conveyor belt. If it confirms the increase, a gate closes, and you are directed down a chute to the prostate cancer “diagnostic testing” belt. You’ve now entered the part of the maze where you are presented with increasingly complex decisions. High PSA levels can be caused by other prostate-related issues and may not be cancer. We need to find out the probable cause, and that’s what your urologist will help determine.

In the next episode, we’ll examine the choices facing patients with elevated PSA levels. Should a biopsy be the first step, or are there other options?

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