Pickleball, My Platform for Prostate Cancer Advocacy -- Part II

It’s on the Pickleball court that I have met fellow prostate cancer survivors. Some are reticent about discussing their diagnosis. I respect that. Others react as if I’m their long lost buddy happy to discuss their journey.

We’re an odd lot. A recent event convinced me that Pickleball was going to be my platform for prostate cancer advocacy and education.

Sharing my story on the court

While shaking hands after a rousing game, a fellow player asked if I had a minute to talk with his brother who had recently been diagnosed with prostate cancer. He asked me all of the “normal” questions. How did you contract prostate cancer? Why not radiation versus daVinci^® Robotic Surgery? Was I incontinent or worse yet impotent? But, he said you look very normal.

I explained each step of my journey from elevated PSA to biopsy to diagnosis to MRI and decision to remove my cancerous prostate. I emphasized that my decision wasn’t done in a vacuum. Several months of research, a supportive wife, and a very good oncologist were important factors. Life as I knew it ceased in order to rally against my diagnosis.

Then I asked about his brother’s case. What was his PSA? What was his Gleason Score? What stage prostate cancer? The answer to all three was “I don’t know” except that 8 of 11 core samples from the biopsy were cancerous and that his brother was being “watchful”.

I explained at a very high level what the Gleason Score means in terms of risk groups. I suggested that he ask his brother to review with him the biopsy test results and simulations which indicate percentages for “living to age”. More important what stage is the prostate cancer? I was a T2C:15% of my prostate was cancerous but was contained in the capsule.

I’m not a urologist or oncologist. I’m a survivor who sweats every PSA test. Therefore without more information, it wasn’t clear where his brother was in the analysis of treatment options.

Offering guidance and helpful resources

I suggested that he and his brother buy the book How to Survive Prostate Cancer by Doctor Patrick Walsh and Janet Farrar Worthington as well as downloading from National Cancer Center Network^® (NCCN) Guidelines for Patients on Prostate Cancer.

I coached him not to waste time on Youtube and Google searching for that magic decoder ring. Prayers and sympathy are fine, but knowledge with the truth rules when dealing with this male-only cancer. I stressed that he assumes the role of advocate for his brother by “getting smart” quickly.

He countered that “only” 8/11 cores were deemed minutely cancerous. I looked him square in the eye and said, “your brother has cancer.” Understanding what stage he’s in sets the table for treatment options.

Every man should get screened

Then I asked him, "What is your PSA?" Frankly, I wasn’t surprised that at his age he did not know it nor ever discussed it with his doctor. I’ve experienced the same responses from fellow players and even on the golf course. That astounded me. He asked should he be worried that he may be genetically predisposed because of his brother? He went on to explain that there had been family members died of cancer but it was attributed to chemical exposure.

At this point, I recommended that he see a urologist. By the way, he’s never seen a urologist so I recommended mine and another urology practice and offered to share my experience with his brother giving him my email and cell phone number.

Learning the jargon is part of the game

As I was leaving the Pickleball courts, another player stopped me and inquired about my surgery. I told him I had prostate surgery. He asked, why? Prostate cancer I said and for grins, I asked him what his most recent PSA results were? What’s PSA? And the conversation begins anew.

With any new sport, Pickleball takes a while to learn: the terms, the positions on the court, the rules, the strategies. The same goes for your prostate, learning all the jargon (PSA, DRE, Gleason Score, Stages 1-4) and all the myriad of treatment options you’ll rely on to stay in the game. Pickleball rocks!

Read Part I of Pickleball, My Platform for Prostate Cancer Advocacy.