My Encounter with a Prostate Diagnosis

Like most men of a certain age, my bi-annual physical/wellness encounter with my primary care physician includes a PSA blood draw. In 2015, I was 65 and my PSA test score was 6 when the normal range for a man of that age is 0 to 4.5. The digital rectal exam (DRE) was negative.

Two years later, my PSA score rose to 9 which was twice as high as the top end of the normal range. Again, the DRE was negative. My primary care physician suggested a prostate biopsy.

At the time, a typical transrectal prostate biopsy was administered in a medical office with a urologist administering a local anesthetic and light sedative. Discussions and reports of this procedure describe discomfort with uneven reports on experienced pain levels. The biopsy site is directed through a sonogram that guides the urologist’s procedure.

There are limitations to this approach (here). First, the sonogram has to show a promising biopsy site on the prostate. Second, there can be some post procedure rectal bleeding and the risk of infection. Third, you must avoid blood thinners for a week before and after the procedure. Finally, three out of four biopsies return negative results. Further yet, only one in ten men with a positive biopsy result have a life-threatening form of prostate cancer. Yes, there are forms of prostate cancer you can live with—more about that later.

Therein resides the issue: Over treatment of prostate diagnoses.

Prior to the physical producing my PSA score of 9, I did quite a bit of research. I found the reports from the U.K.’s National Health Service informative. Prostate cancer is the most common form of cancer for men in the U.K. (here). Black men are at greater risk by a factor of 2x to 3x than their counterparts.

In March, I’ll turn 70. Like many men, the infinite bladder of my youth has given way to a bladder which functions as a brief gateway or layover: Fluids in, urine out. In my 50’s awakening to urinate overnight became a new fact of life. Today, I manage to sleep through the night about ten percent of the time. However, in my case, I seem to awake after six hours of sleep. I lay in bed trying to fall back asleep. Eventually, I give up the fight and rise. That’s when I decide I might as well visit the bathroom. I seldom awake because I have the need to urinate. That does happen from time to time, but it’s far from the usual set of circumstances.

Last November, my wellness visit showed a PSA score of 12. My primary care physician administered the digital rectal exam which, again, proved negative. However, my physician strongly urged me to take a more aggressive approach. Using my now considerable lay person’s knowledge through my extensive research, I insisted on an MRI prior to anything more invasive.

Most prostate biopsies return negative results. Using an MRI scan to detect suspicious tissue in the prostate is believed to aid urologists and men whether to schedule a biopsy (here). My insurance company approved the request, and it was off to the MRI site I went.

My MRI involved a high contrast imaging agent administered by an IV during the latter stage of the MRI process. If you’ve not had an MRI, the experience can be . . . interesting and for some intimidating. This is not invasive, if you discount the IV, but it does involve being shoved into a tube, like a loaf of bread into an oven with a pile driver operating a bit too close for comfort. The process is painless, and I was provided with earphones playing my favorite genre of music in the background. The worst part of the process was the self-administered enema (my first!) two to three hours before the procedure.

The next day, my physician called with the results. He told me the MRI showed my prostate was clear. However, the radiologist who interpreted the MRI scan called attention to the nearby lymph nodes reported to be swollen. The radiologist opined the likelihood of cancer was high.

Okay, I’m not a healthcare professional. My knowledge of gross human anatomy does not extend beyond counting fingers, toes, and genitalia. So, when I read the radiologist’s written report, I was not schooled enough to realize the swollen nodules mentioned were in the prostate—not the lymph glands. Overnight, my concerns about prostate cancer were replaced by a possible blood cancer involving the lymphatic system.

I did as I always have: A crash course on WebMD, and other sources, on the various forms of lymphatic cancers. Holy shit! Instantly, I longed for prostate cancer instead.

The radiologist’s diagnosis moved me to the front of the line to visit the urologist. During my initial visit, I relayed the physician’s analysis of the radiologist’s report. The urologist, having read the same report, said, no, the suspect nodule was definitely in the prostate. Apparently, I wasn’t the only person challenged in gross human anatomy.

Both Wendy and I emerged from the urologist’s office greatly relieved and I was scheduled for an in-hospital prostate assay eight days later. Suddenly, carpet bombing my prostate was a welcomed next step.

My last hospital encounter in 2015 involved a physician’s fear that a chest muscle injury might be a coronary event. Four hours in a tier one trauma center followed by a lecture from an attending physician for having wasted the emergency room’s valuable resources, sent me home distrustful of medical protocols for people in my age group and a bill to Medicare for almost $8K.

My last surgical encounter, an emergency appendectomy, occurred in 1972. So the hospital protocol for the prostate biopsy was a pleasant experience. A first visit involved some preop tests—blood, EKG, chest x-ray—and a brief interview with a nurse about what to expect. Two days later, I presented myself at 5 a.m. as scheduled, swapped my civilian attire for a backless hospital gown, special no-slip socks, and an IV.

I awoke from anesthesia a little more than three hours from the time of my admission. Most of the intervening time was spent in preparation and waiting. The procedure itself took less than thirty minutes. The most irksome part of the entire process was the catheter I sported for the next five days, and the less said about that, the better.

My urologist took over 48 tissue samples from my prostate. And, as he said, “really beat me up” in the area of the suspect nodules. The bloody urine in the catheter bag for the first four days was concerning, but the relief of losing the catheter made everything else seem minor by comparison.

Yesterday, we sat in the urologist’s office awaiting the pathologist’s results, and, quite frankly, expecting the worst. Broadly speaking, the report might be “no cancer,” treatable cancer, or go home and make the necessary arrangements. I always plan for the worst and hope for the best. In this instance, the worst outcome overtook all of my thoughts. I was prepared to do everything I could to prepare my bride to cope with the end and whatever followed that. So, when the urologist announced, “Good news, no cancer,” we were both gobsmacked. 

We both peppered the urologist with questions about how a “no cancer” diagnosis was possible following the radiologist’s report and even the urologist’s advice that I likely had prostate cancer. True relief did not occur until we emerged from the building.

Let me be candid, men. I cried. I was in shock—good shock, but shock, nonetheless. Even now it’s hard not to be emotional, but analytical me, having done all of my research beforehand, is not particularly thrilled to be where I am.

What?!

Reading through the prostate cancer research literature is a recurrent theme that asks if the healthcare industry isn’t over treating possible prostate cancer patients with a reduction in the quality of life. Remember, most biopsies are negative. Most prostate cancers do not require aggressive treatment.

In my case, my PSA score remains high by clinical standards. My extensive biopsy—although tissue extractions—was negative. If future PSA scores remain at the current level, fine. If they increase, then protocol calls for another biopsy.

There’s not much research on men with negative biopsy results and continued high PSA scores—especially where the patient has had extensive tissue extraction and analysis. In a sense, I’m right back where I started in late 2015. I have a high PSA score. It might stabilize. It might not. Protocols are based on doing something in the face of such evidence, and that something is yet another biopsy with its one-to-two week recovery. Medicine is prepared to take action in such circumstances. 

I was fortunate. I had a well-educated, well trained urologist with an excellent reputation and practice. He even knows gross human anatomy. A stumble my own primary care physician had sending us into a week-long fear of an illness with markedly worse treatments and outcomes. I’ve encountered one study reporting that second biopsy events in men with a prior negative tissue analysis have an even higher rate of a negative report (here).

The “best” outcome—although medical professionals will disagree—is removal of the prostate or targeted radiology treatments, like cyberknife or proton therapy, drive PSA scores down to acceptable ranges for men in my age group. When I suggested removal of my prostate, my urologist was alarmed. Why remove any organ without a supporting diagnosis? Removing the prostate carries its own set of risks. Targeted radiology isn’t perfect and risks harming nearby healthy tissue.

The prospect of regular three-to-four month PSA tests with possible future biopsy recommendations, is one thing if you’re 45. It’s an entirely different matter when you’re in the fourth quarter of life.

More to follow.

Copyright 2020, Howard D. Weiner