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Patmos Rhodes

Joining the Cancer Community: Thanks, But No Thanks

  • William Romanowski
  • Sep 26, 2024
  • 6 min read

Updated: Sep 27, 2024

October 1, 2024

(6-minute read)

Keywords: cancer, prostatectomy, Gleason score, PSA


Around the time I turned 50, I looked in the mirror and remembered swearing when I was young that I would never look like that. I dieted, exercised, played tennis on a local club team – we won the state championship in 2006 – and got into my best shape in a while, weighing what I did when I graduated from high school.


Other than having cancer, I was in excellent health.


It’s no surprise to learn that people meet their cancer diagnosis with everything from sheer disbelief – this can’t be happening. I’m feeling absolutely fine – to jumping immediate to DEFCON Level 1 (in military terms signaling the outbreak of nuclear war). Those I’ve talked with describe their initial shock, then facing their fears as best as they can, and following their doctor’s orders in the hope of being cured.


As for me, it was hard having my life upended. The days were surreal. I cried a lot. Avoided people as much as possible. Had to do some deep breathing to relieve panic attacks at the thought of having to tell my children. My sleep was interrupted by horrific nightmares that were so real they seemed like premonitions.


I always had several tracks running in my mind at the same time. I wrote in my journal, “I’m on an emotional rollercoaster.”


This may seem strange, but the one feeling I have never had, not for one single second, is anger. That’s hard to explain (a future blog post). And all the while, other than some residual effects from the biopsy, I felt perfectly fine.


Your Mission…


It was startling at first, to hear the Grim Reaper knocking at my door – even if only to let me know he’s in the neighborhood and wants to make sure he’s got my address right. What came next was a combination of fear – I was not ready to die – and a strong sense of helplessness that brought me to my knees.


Jacob Wrestling with the Angel (1659).

I am a person of faith. I wrestled with the angel of God like Jacob, who refused to let go until he received a blessing, and Abraham, who, when hearing God’s plans to destroy Sodom and Gomorrah, appealed to God’s justice and mercy.


Now, you want to be careful when beseeching God.


There is an Old Testament proverb to the effect that you can do whatever the hell you want, it’s “the Lord’s purpose that prevails.” And, as poor ole Job discovered, God can get a little snarky if you don’t know when to stop questioning that divine purpose.

Where were you when I laid the earth’s foundation?


"Tell me, if you understand. Who marked off its dimensions? Surely you know!

And if that’s not bad enough, a little later, God asks,

“Have the gates of death been shown to you? Have you seen the gates of the deepest darkness?”

Um, no. And I was kind of hoping to skip that stop on the tour if you don’t mind.


While all this was going on, it was the dark of winter and my wife was out of town coordinating a conference in Athens, Greece. I decided to wait until she returned to tell her. We sat together, talking, crying, laughing. “We’ll get through this. We’ll get through this.” And decided to keep all this on the downlow until we knew the whole situation. No point in worrying others needlessly.


…Should You Choose to Accept It


I love this. Entering a medical building for the first time, I asked and was told, “Turn right at the receptionist desk and go down a long hallway. When you smell the coffee, turn left, go up one flight of stairs. It’ll be on the right.”


A biopsy can determine if you have cancer but not whether the tumor has spread beyond the prostate. My initial diagnosis was followed by a flurry of tests; my body became an open book, poked and prodded in sterile medical environments (where I couldn’t help noticing I was always the oldest person in the room). And more than that, my life flew open like the front door caught in a gust of wind. Complete strangers were suddenly privy to intimate details, and I had to trust them with my health and well-being.


The various scans came back showing no signs of cancer anywhere else in my body. Whew.


There are different grades of prostate cancer. Who knew? My Gleason Score, which describes what the actual cancer cells look, was 4 + 3 = 7, borderline aggressive, and I was told, can act like an 8, which is considered high grade cancer (on a scale of 1 to 10).

I asked, “What do most men have?” “Five or six.” Hmm. That’s not good.

There was no question, my prostate had to be removed. Now, decision time.


There are two ways to perform prostate cancer surgery, both having some advantages and disadvantages. In a conventional radical retropubic prostatectomy (try saying that fast three times), also called open surgery, the surgeon makes an abdominal incision, reaches inside your body, and by touch, removes the prostate. In the other, a robotic prostatectomy, a laparoscopic surgery team uses a three-dimensional endoscope and miniaturized robotic instruments to remove the prostate.


My urologist only performed open surgeries. “No question in my mind,” he said. It was his “professional opinion.” He referred me to another urologist who had done over 500 robotic surgeries. On the advice of friends, I sought a second opinion from yet another urologist who performed both types of surgery. He preferred the open procedure in my case. Eventually, they all put their heads together, though I was not (singing) “in the room where it happened, room where it happened.” Maybe they flipped a coin (I’m joking). They talked things over, and I was scheduled for robotic surgery – in two months.


What!? Two months! That seemed like an awfully long time to be living with a time bomb inside me.


Even though he could have done an open surgery earlier, my urologist was still convinced I should wait. Two minutes later, the phone rang. What was only a slim possibility happened. There was a cancellation. It was Tuesday and I was scheduled for surgery on that Friday. “Providence,” he said.


There were some hard conversations to be had, and a lot of arrangements to be made quickly, including finding someone to take over my spring courses. Plans had to be put on hold or terminated (uh, poor word choice).


My initial prognosis was that I had three to five years to live. No doctor told me that, but there are resources – some they provide, some online (but you have to be very careful about what you read online). Based on my “numbers” it was not hard to figure it out for myself.


Xenograft Model to Study Prostate Cancer.

Of course, no one really wanted to believe that. I suppose they were either in denial, exceedingly hopeful, or perhaps unwilling to be honest with me. But since it was my ass in the sling (so to speak), I kept that prognosis on the table. That’s my modus operandi: gather all the pieces and arrange them by likelihood. That way I’m less likely to be surprised or unprepared for some eventuality.


I went into surgery hoping for the best but with a gut feeling I should prepare myself for the worst. In my case, 8 out of 10 samples in my biopsy were cancerous: some close to the surface of the gland. That’s not good.


Like I Have a Choice


After surgery, it was a long week of waiting for the pathology report. It came back showing positive margins, which is not what it sounds. Positive doesn’t mean good or encouraging, but rather in the affirmative. Cancer cells were found right at the margins of the prostate, meaning they had likely breached the gland, and some had been left behind and roaming free my body.


But … my post-surgery PSA (prostate specific antigen), a protein produced by normal and malignant prostate cells, was nondetectable. Maybe I would defy the odds. Or maybe I just kicked the can down the road.

 

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