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Navigating the Gray Area: A Personal Account of PSA Testing and Prostate Cancer Diagnosis

A senior man, Bob Jacobs, at a ZERO Run/Walk wearing a white hat with a blue ribbon, a light blue ZERO Run/Walk t-shirt with a bib that says "Bob's Baby Blues," and holding an award for Top Rookie Team of the year

In 2017, as part of my physical to begin Medicare, my PSA was tested, and it was 3.49. Then, from 2018 to 2021, which has been considered a gray area in how primary care doctors are required to handle PSA testing, I was not tested. Even though I showed up for the annual blood work for my annual Medicare physical and wellness check, the PSA test was not ordered by my PCP, whom I trusted. When I switched Medicare health plans in 2022, the intake physical by my new PCP revealed a PSA of 14. Subsequently, after many medical procedures, including a radical prostatectomy, I was diagnosed with metastatic prostate cancer (Gleason Score 9 (4+5)). It’s clear to me that the "gray area" cited above contributed to the acceleration of my PSA due to the growth of prostate cancer, which ultimately broke out of the prostate capsule. If it had been caught sooner, perhaps with just one PSA test in 2019, the cancer would have been diagnosed, and the metastases, most likely, would have been prevented.

After all of this, based on the best practices of the medical establishment during 2018–2021 and receiving expert opinion looking back over my case, I had to accept that this was my fault.

WHY?? During that gray period of 2018 to 2021, there was a shared responsibility between doctor and patient to discuss screening. (The pandemic complicated things in 2020–2021, as telehealth changed the nature of medical appointments.)

The three main published guidelines followed by primary care doctors for prostate cancer screening are published by the American Cancer Society (ACS), the American Urological Association (AUA), and the US Preventive Services Task Force (USPSTF). The USPSTF guideline is the most widely used; its 2012 version advised against PSA screening, which was seen as more harmful than beneficial for the patient due to the adverse effects of overdiagnosis and overtreatment. The ACS (2010) and AUA (2013) guidelines recommended "shared decision-making by doctor and patient (i.e., having a conversation) about PSA screening.

In 2018, the USPSTF guideline changed to "shared decision-making" because two major clinical trials showed a marginal benefit for men who chose PSA screening. But the standard of care for practitioners did not adjust instantly in 2018, since it takes up to two years of "practice push" to implement a new standard.

So, during the period relevant to my case, there was no single way to conform to the standard of care, and it was OK for a primary care doctor to screen or not screen for prostate cancer since screening was seen as harmful, and the doctor and patient did not need to have a conversation about it until about 2021, when the published guidelines came into clinical practice alignment. Given this evolution of the standard during my care by my PCP, 2018 to 2021, with no single rule that everyone was following, my PCP was not guided to order a PSA test after 2017.

A senior man, Bob Jacobs, sitting in a hospital room with a radiation machine behind him. He's wearing a medical gown and holding a sign that says "All Done"

A lingering question in my mind was also answered. Whether the 15-month delay in diagnosis caused by my PCP’s failure to do a PSA test in 2021 worsened my prognosis Presumably, an earlier diagnosis would have meant no lymph node involvement, but because of prostate cancer’s slow growth generally, my outlook would not necessarily have been better. Prostate cancer is unique in that early diagnosis does not always improve outcomes, unlike lung and breast cancer. Please note that during the period of no PSA testing, I did not have any unusual urinary issues. However, I contend the hip, pelvic, and sciatica pain I experienced was connected to the growth of the cancer in my prostate. Given the symptoms, I was treated via cortisone shots in my back, dosages of gabapentin, and physical therapy, most notably dry needling. I did receive relief from these interventions. Yet, following my radical prostatectomy, the symptoms vanished. I truly believe my prostate cancer led to an incorrect diagnosis of lower back and pelvic pain due to physiologic issues. In my opinion, if I had not finally obtained a PSA test in 2022 and the cancer continued to hide behind physiologic symptoms, I literally would be dying instead of being treated!

In order to keep yourself and the medical establishment accountable and responsible, do the following:

  1. Thoroughly research and document your family history of any cancer. Give that documentation to your PCP and urologist, and ensure it appears in their doctor's notes.
  2. If you are unsure of your family history of cancer, get a baseline PSA test. Then, talk to your PCP or urologist about the results. Then, discuss and agree upon the timing for the next PSA test to compare with the baseline. If your PSA is between 3 and 4, the sooner the better, since up to 4 is considered normal.
  3. Again, until you are satisfied with the fact-based explanation of the health (good or bad) of your prostate, insist on getting screened via PSA testing or, if necessary, a biopsy or prostate-specific MRI. Until YOU ARE SATISFIED with the Doctors’ answer, make sure it is documented.
  4. Finally, the following is BULLS***—PSA guidelines say not to screen a 70-year-old due to the danger of overdiagnosis and overtreatment. If you want to live well into your 80s, get tested no matter how old you are!

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A senior man, Bob Jacobs, wearing a light blue t-shirt and taking a selfie in front of some greenery
Bob Jacobs

Bob is a prostate cancer survivor, Run/Walk participant, and supporter of ZERO. He's happily married to Barbara Ryan and is the father of two sons. Since being retired in 2017, he loves spending time with his three grandchildren, playing golf, cooking, and taking day-trips.