Eight Years

It was eight years ago today that I learned that I had prostate cancer. I had no idea then what would transpire in the days and weeks ahead, and I certainly had no idea that I’d still be dealing with it—and writing about it—eight years later.

You’ve heard me say multiple times that, once you introduce the word cancer into your vocabulary, it never goes away, even if the disease does. There will always be that little cloud called “fear of recurrence” that will follow you around for the rest of your days.

You’ve also seen me throw around the phrase cancer-free with each successive undetectable post-surgery PSA test. It’s hard not to. With each undetectable test result over time, you become more confident that you have this beat. You get lulled into a sense of routine and PSA tests become less scary. But because cancer is so insidious, there’s a danger in using words like cancer-free and cured.

My first indication of biochemical recurrence 54 months after surgery was an utterly unexpected slap upside the head. “Not so fast, fool!”

Ever since then, I’ve become a big fan of NED—No Evidence of Disease—as a better descriptor of how successful a treatment option has been because it accounts for that little recurrence cloud. Saying cancer-free or cure implies a finality. You’re done. It’s behind you. A decade later, you may find out that no, in fact, you’re not done with cancer.

Some may say that’s a rather dismal outlook on things and that we need to be optimistic. Perhaps. I prefer to be more realistic, obviously as a result of my own recurrence experience. And, just because I had recurrence, it doesn’t mean that others will as well. You may live the rest of your days with no evidence of disease and, if you do, more power to you.

There is good news. It’s eight years later and I’m still here, still pretty much fully functioning, and still writing.

After eight years, I’ve learned:

  • Be optimistic but understand that, with cancer, there are no guarantees.
  • Research, research, and research some more, but step away and take time for your mental health.
  • We may think that we’re fighting a battle, but the reality is that the cancer is in control and we’re simply reacting to the next treatment or test result.

My next PSA test will be on 6 December 2018 if all goes to plan. Will it remain stable at 0.11 ng/ml, or will it return to an upward movement? Stay tuned.

Work life and my travels over the last three months or so have been so busy that I haven’t thought, read, or researched about prostate cancer much at all. It’s been a pleasant break. But the one thing that has been lingering in the back of my mind is the trial of 68Ga-PSMA-11 PET/CT Molecular Imaging for Prostate Cancer Salvage Radiotherapy Planning [PSMA-SRT] at the University of California Los Angeles (UCLA).

I’m not sure that I would want to enroll in the full-blown trial itself, but I would like to learn whether or not I could get the scan outside of the trial, even if it’s at my own expense. I’d really like to know that we’re zapping where the cancer is located instead of blindly, based on statistics, if I do choose salvage radiation therapy. It’s something I’ll discuss with the urologist on 18 December 2018.

N.E.D. versus Cancer-free

My current predicament of a post-surgery increasing PSA has me reflecting on terminology that I see used in discussions about prostate cancer, and some of it has been downright annoying to me. (Perhaps it’s annoying because I’m now 60 and can claim official curmudgeon status.)

But, if I’m being honest, I’m probably more annoyed with myself than with anyone else.

Dry lake bed at Fossil Falls

All of it centers around the use of the phrase cancer-free.

I see the “newbies” coming out of their first post-surgery PSA test jubilantly declaring themselves to be cancer-free with their first undetectable reading, as well as with any subsequent readings. Don’t get me wrong: It is something to celebrate. Hell, I did it. I declared myself to be cancer-free multiple times, well after my surgery.

But now, facing recurrence, every time I see someone declaring themselves cancer-free, I bite my lip and say to myself, “Just wait five or seven or ten years and see if you can still say that, Buck-o.”

“Bitter. Table for one. Bitter.”

Fortunately, my surgeon was very clear in telling me before the surgery what the chances of recurrence would be. He was managing my expectations with a dose of reality. However, one thing he didn’t introduce me to was the phrase, no evidence of disease.

No Evidence of Disease (NED) should be much more widely used to keep us all grounded in the possibility that, no matter how successful our first-line treatment appears to have been, there’s always that possibility of recurrence. “Cured” and “cancer-free” both give a false sense of security that none of us can count on.

So to those coming out of your prostatectomies, please declare that there’s no evidence of disease on your undetectable PSAs, and hope that you can continue to do that for the rest of your life. In doing so—in managing those expectations—you may be better prepared for that fateful day 54 months after your surgery when there’s now, in fact, evidence of disease. You’ll still say, “Crap!” (or some other string of colorful expletives that would make a sailor blush), but making the leap from NED to recurrence may be just a tad easier than from cancer-free to recurrence.

You can tell from my last few posts that I’m getting back into my writing for therapy mode (or, as a friend calls it, “verbal vomiting”). It is therapeutic for me to have an outlet for some of these thoughts; I can spew them and, once they’re out, put them behind me.

Thanks for putting up with them!