The Prostate Papers—Chapter 2: Down the Rabbit Hole

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.

Too Much Information?

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.

The Prostate Papers Goes Nerdy

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 research organizations. The information includes research data interpreted into human-readable form and blended with clinical experience. These sites include the Mayo Clinic, the Cleveland Clinic, and the many clinics associated with major medical schools. MedlinePlus from the National Library of Medicine is also a good source. Stick to these websites to keep your research comprehensible yet with solid, high-quality information.

As you move down the value curve, you reach the marketing websites of clinics specializing in specific cancer treatments and companies promoting their products. The information they provide can be valuable but frequently lacks a broader, unbiased perspective. Using the data is fine, but always with a grain of salt.

Other sources I generally avoid are online prostate cancer forums such as those on Reddit. My observation is they tend to require heavy screening to filter out uninformed opinions and anecdotal data. I’m certain there may be some valuable insights on these forums, but for my prostate cancer research, the benefit just wasn’t worth the effort.

Junk, Misinformation, Scams and ChatGPT

And then there’s just plain old-fashioned junk, misinformation, and scams. If somebody is promoting a magical, no-risk cure for prostate cancer, it’s bogus. Just stay away. There is no miracle supplement or treatment that the medical community has failed to discover.

Finally, a quick sidebar. In my research, I chose not to use artificial intelligence tools in the form of ChatGPT even though I have a paid subscription. I have a decent understanding of how large-language models work and how they are trained. They may offer up reasonable-sounding answers, but because of the nature of these generative AI systems, it’s almost impossible for them to cite any sources they use in the output. As a matter of fact, they never make statements based on hard evidence. That’s not how they work. Ask an AI expert if they would trust the answers from ChatGPT if they were making decisions about their cancer. Probably not.

My Findings

So, what did I discover from all this research for The Prostate Papers? First, in my view, prostate cancer is challenging. It’s a leading cancer killer among men (#2, I believe), yet millions of old guys are walking around with what’s called “indolent” cancer in their prostates. It’s also not typically a ‘one-and-done’ cancer with a simple diagnosis and treatment trajectory. Now, dealing with any cancer is not a cakewalk, and every cancer is different. Many treatments can be intense and debilitating. Most of us can speak from personal experience, knowing friends and relatives who have undergone surgical, chemotherapy, and radiation treatments. It’s not fun.

Second, I learned that treating prostate cancer is a big business—big, like $13 billion in the U.S. alone in 2023—and growing fast. It’s not all bad since the market opportunity drives rapid progress in prostate cancer diagnostic tools and treatments. Just remember that the economic size of this market creates obvious biases. Be a smart shopper and a smarter patient. Demand evidence about what works, whether from your doctor or medical supplier.

Third, I was quickly educated on the prostate biopsy procedure. A biopsy is often necessary, but it is “unpleasant” at best. Another sidebar here—I was whining to a friend about my looming biopsy. I called it a barbaric medical procedure in the third decade of the 21st century. We both agreed that if we could be sedated during a colonoscopy, why not during a prostate biopsy? When our discussion about avoiding a little discomfort during the procedure got back to our partners (one a doctor, the other a nurse), the women quickly let us know about a range of much more challenging sedation-free medical procedures they endured, starting with natural childbirth. As their list of painful procedures grew, we realized this was not a winnable discussion. The wimps quickly withdrew their suggestion for sedation. A shot of whiskey and biting down on a hunk of leather was all we needed.

Treatment Side Effects

Finally, I learned that treatment side effects are a constant, unifying thread in almost every discussion or research paper. The risk of incontinence and sexual dysfunction after treatment is very real. Yes, some men dodge these bullets, but many don’t. Between the biopsy and the high probability of side effects, it’s no wonder men are hesitant to start down the prostate cancer path. I’ll return to these issues in the next episodes and drill down on the diagnostic and treatment process.

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3 comments on “The Prostate Papers—Chapter 2: Down the Rabbit Hole

  1. judy henry says:

    always interesting to try to follow you down the Alice In Wonderland Rabbit hole, an d i am interested to folloooooow along with you!

  2. Robert C Eaton PhD says:

    Gary, this is the most well-informed account I can imagine. Thanks.

    I’m well down this rabbit hole. Though, I have the advantage of being a former biomedical researcher and NIH grant evaluator [kind of like being on the Supreme Court when it comes to evaluating biomedical science]. That’s only to say that I have experience evaluating such issues. You are totally right-on in all that you conveyed. Though, like you I am not an MD, just trained in medical schools and supported by the NIH during my career.

    A comment to add is that guys need to be aware of effects of environmental factors on PSA values — like riding a trail bike 20 miles before the PSA test or, frankly, having a sexual experience beforehand. The problem is a PCP who doesn’t know this and thinks there is a PSA danger “threshold”, probably about 4.0, indicative of prostate cancer. The research on artificially elevated PSAs is not well developed, though for me I know it makes about a 30% increase in PSA level. Other medical issues also elevate PSAs, such as general systematic inflammation. I try to wait 2 weeks before a PSA test.

    The other issue is PSA density. Prostate glands typically grow in size with age, and they correspondingly produce more PSA. Thus, the older a guy is, the higher the PSA value [on average]. This resulted in the American Urological Association making the recommendation a few years ago to not do PSAs on men older than 70 years. [But that was controversial in the field.] The only way to know density is after doing an MRI. Yet, some physicians are ready to jump on the biopsy bandwagon based only on the PSA score, disregarding the patient’s age or prostate size.

    Curiously, when I discussed this with my PCP [a medical school physician] she wasn’t aware of the published findings on these issues, or of the various types of biopsies [and their corresponding side effects]. When a guy reached 4.0, she’d refer him to the urologist. Unfortunately, given potential commercial influences, who knows where that would lead? [There are some published estimates on unnecessary biopsies, but I’ll skip that for now].

    Again, I’m not a physician, and am therefore not licensed to say anything about medical practice. This is only my view from an informed reading of the urology research publications. But, perhaps these are some things guys could be asking.

    1. Gary Ebersole says:

      Robert, thanks for the excellent points you made. I was especially in tune with the pre-PSA testing regimen. My follow-up PSA test in February was based on my request since I knew I was not as diligent as usually am before a test following the guidelines you laid out. Given the evidence about bike riding and sexual activity impact on PSA test scores, I share your surprise more physicians don’t mention it to their patients. I plan to discuss it in Chapter 4 when I introduce the prostate cancer “maze”.

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