From Doctor to Patient: A Lifelong Journey
Last updated: September 2023
My journey started as a child with my grandfather's death from prostate cancer. He was at the VA hospital and for some reason they wouldn't let me see him at the end even though he requested it. I was only 8 years old but there is still a bit of sadness in the memory. I'm not sure, but I think this experience helped influence my decision to become a doctor, and to serve on the board of a hospice many years later.
Too little, too late
In the early days of my practice in the 1970s and 80s, I treated a number of patients with prostate cancer. One particular patient comes to mind and represents the state of the art during these decades. A new patient, who happened to be a funeral director in our small town, came in with a history of back pain unrelieved by nonprescription pain meds.
I can still feel what I found on the digital prostate exam. Instead of being as smooth as a baby's bottom, his prostate felt like a frozen scoop of ice cream that had been rolled in peanuts. My heart sank!
This story repeated itself time and time again during this period. Men being diagnosed only when the disease had ravaged their bones. At that time the only treatment was some form of castration to lower testosterone levels; either physical castration or medical. However, this treatment was usually just too little and too late to offer much relief or to substantially extend life expectancy.
Catching prostate cancer early with the PSA
It was in the 1990s that we finally had a way to catch this culprit before it became advanced. That was when the PSA (prostate specific antigen) became available in mainstream practice as a tool that could help detect warning signs of prostate cancer.1
At first the PSA was less accurate or sensitive than it is today. Results were posted as less than 0.1 mg/dl, so PSAs could have been rising for a while before reaching the detectable level. Happily today many labs measure values down to levels below that before calling the PSA undetectable!
My biopsy was positive
The development of the PSA came just in time for me. In 1996, two years after PSAs were widely available, I had my first test. My doctor thought he might have felt a small bump on my prostate and in an excess of caution ordered a PSA. I was 49 and my PSA was 3.6. While the general standard at that time was 4.0, for men under 50 any value over 2.0 was suspicious.
I underwent biopsies and for the first time began to realize that I was not in total control of this process! The biopsies were positive for prostate cancer Gleason grade 7, and my urologist said I could go to Johns Hopkins or any other center for surgery. But since he had a reputation as a wizard with a scalpel, I chose to have my surgery in January of 1997 in Wichita, Kansas.
My surgery went well. But while one of two nerves allowing erectile function was spared, the other nerve was encased with cancer and sacrificed. A recommendation for orchiectomy took me by surprise and I chose not to opt for castration; but rather to just take my chances! The only other way to lower my testosterone back then was Lupron, which was approved in the long-acting form in 1989. Looking back, I don't recall the Lupron option being discussed...I must have quit listening at surgical castration!
Understanding the patient perspective
As I settled in and my yearly PSAs continued to be less than 0.1 ng.dl, I felt "cured." I taught a prostate disease module to both Nurse Practitioner and Physician Assistant students and gave lectures on prostate disease to medical students as well.
Then, about 5 years ago my PSA finally came back a 0.1, not less than 0.1! Slowly the PSA rose. Now, after radiation to one metastasis and the finding of a cancerous node and a course of ADT, I'm a doctor who more fully understands what it looks like from the other side of the desk!
Early detection is critical
It is amazing how much things have advanced since 2000. Many other forms of ADT including Eligard and the pill Orgovyx have been developed. The use of MRIs has helped pinpoint prostate lesions for better and more accurate biopsies. The development of the PSMA PET scan has allowed us to help identify whether prostate cancer has spread or returned. Beyond all this, genetic testing and immunotherapy are evolving.
The future is bright. This makes it even more important for each of us with early or even daily advanced disease to stay on top of things. Unfortunately, even today, we find men who have failed to screen and/or men with symptoms that have been ignored or misdiagnosed. I often wish that I had even some of today's tools when I was practicing all during the last century.
It is amazing what the last few years have meant in the treatment of all cancers and thankfully in prostate cancer as well. This is why we need to spread the word on prostate cancer and the critical importance of early detection and careful lifelong follow-up!
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