This is the second post documenting my journey, beginning with the prostate checkup, including the primary care doctor’s initial digital rectal exam (DRE) and referral to a urologist, additional tests such as the blood-based prostate specific antigen test (PSA), biopsy of the prostate, and my eventual choice for active surveillance.

Prostate biopsy and the confirmatory biopsy diagnosis

After the confirmatory biopsy a year later, the results concerned me even more: Two samples had a small percentage of adenocarcinoma. Later that day, after hours searching online, I still had no bearing and could not get the term “prostate cancer” off my mind. Soon afterward, my biopsy slides were given a Gleason Score of 3+3.  All this new terminology felt overwhelming. I had not exactly been a good science student in school!

PSA test results and prostate Gleason score

The urologist told me he could not be certain the two biomarkers—the PSA test and the Gleason score—would not change, because the biopsy only sampled a tiny part of the prostate and could have missed other areas with carcinomas. The urologist also advised that the PSA test could be influenced by other behavior, such as riding a bike or strenuous exercise. He suggested I not jump to any conclusions and did not recommend treatment for cancer. My wife was right, as wives often are.

Months later the urologist sold his practice, and I was invited to meet the new doctor. In a surprising turn of events, he told me the prostate cancer would likely grow and that I would need treatment within five years. He recommended a prostatectomy sooner rather than later. Who was this guy? Why did his prognosis seem so much bleaker than the one I received from my retired urologist? What were my options? Back to the search engine!

Prostate cancer: Getting a second opinion

When you are unsure of your doctor’s advice or the meaning of medical procedure results, consider a second opinion. Sometimes errors occur in test readings. Most medical insurers cover a second opinion, as mine did. I found another urologist and scheduled an appointment, where I learned about additional tests known as genomic tests, such as Myriad’s Prolaris^® test.

Since my confirmatory biopsy had occurred over 12 months earlier, the second urologist wanted a different type known as a “systemic prostate biopsy,” involving 21 core samples instead of 12. After approval from my health insurer, I was again biopsied, and the results were mostly the same: Gleason Score 3+3 with two tumors, with only a small percentage of cancer in each biopsy core. Some of my biopsy cores were sent to the genomic testing laboratory, which later confirmed I was at low-low risk for cancer progression. I finally had completed my initial diagnosis with prostate cancer. We will cover changes to the biopsy again in future posts. Away from the search engine and back to watching family movies!

Prostate cancer active surveillance and PSA levels

Active Surveillance (AS) was established and began to be more widespread in clinical practices beginning in about 1990 to avoid unnecessary treatment such as radiation or surgery for men diagnosed with low-risk prostate cancer. I chose AS in about 2012, after my second-opinion urology consultation. I felt comfortable with this doctor, as she answered all my questions and addressed my unfounded fears. She was very clear that together she and I would make informed decisions about my care and AS, which usually requires repeat biopsies and PSA tests. At that time, I was told to expect periodic appointments with my urologist and PSA tests every six months, depending on whether or not the PSA increased.

Earlier I had considered another urologist who was unilateral and would not let me decide about my care. Ultimately, I found a doctor who was easier to talk to and gave me some control over deciding what to do about my prostate care. In prostate care, mutual decision making and trust between the doctor and patient are critical to making AS work.

Some men choose AS, but there are alternatives. “Watchful waiting” was the standard before AS and is still useful for men older than 75 who may not tolerate treatment due to poor overall health or who, for personal reasons, choose more passive prostate cancer care. Recent changes driven by research suggest that even men with moderate risk Gleason scores of 3+4 can choose AS. Professional consortiums and research into changing AS continue. Men with prostate cancer may benefit from joining and attending educational webinars presented free by online groups such as ASPI, ANCAN and ZER0-The End of Prostate Cancer.

There are many other groups, but some do not support AS protocols. I prefer groups that are active in tracking AS protocols, present expert presentations by scientists or clinicians and allow questions during their presentations. Support from these virtual groups can be advantageous for both men and their families. Some have local events that men can chose to attend or join online, so check them out. Ask your primary care doctor and urologist for local referrals to prostate support groups. Put some thought into developing a great working relationship with your doctors. We will cover this relationship building in a future post.

Prostate cancer and treatment information

This blog will continue to update you on changes to all parts of the prostate cancer journey. We plan to post additional information about the AS journey and its timing, tests, biomarkers, timely and understandable education about prostate care, and, above all, information to keep you knowledgeable and offset any fears or anxiety about cancer.

Critical change has occurred in prostate cancer care just within the past two years and will likely continue. Recent research is beginning to suggest that lifestyle changes such as diet and exercise may improve your chances of living with prostate cancer and improve your overall health. We all respect the big C and have seen its impact on friends and family. But tremendous progress in research and applied technology and treatment, including those from Myriad Genetics, carry us forward, away from fear and closer to our families. Yes, you can live with prostate cancer. Si se puede!

Until the next post, live and learn, get out with the family, and enjoy life.

Geoff is dedicated to helping families and friends support a prostate cancer patient. He joined the board of Active Surveillance Patients International (ASPI) in 2018 and is an 11-year PCa patient. As a PCa patient advocate, he envisions providing a broad understanding of how patients can collaborate with clinicians for realistic medical care. He enjoys meeting and learning from his clinicians, cancer researchers, providing free online programs for patients, and reminds us that “to live, learn and thrive with PCa” is the motto of ASPI. He is glad he took science courses for understanding a healthy lifestyle that includes exercise and diet.

Geoff also volunteers as a board member and past chairman of the Placer County Mental Health Advisory Board where his interest includes therapy and resources for AS men, and a broad oversight of community mental health programs and innovations. He is married to Constance McLennan, a fine artist, has a grown son, and lives in Northern California.

Want to read more like this? Read Patient Prostate Cancer Journey Part 1: A Urology Exam Reveals Unexpected Results