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Message: Recaf to the Rescue!

Recaf to the Rescue!

posted on Oct 21, 2009 05:13PM

An Urgent Plea
I'm not a physician, so what follows is just my personal opinion. You be me for a moment, except this time we'll get it right! Once past 50, you start by getting annual PSA's and digital rectal exams. If you come from a family with a cancer history, you start these at age 40. If you do develop prostate cancer, get a ProstaScint exam if at time of biopsy (or surgery), it appears (or you have evidence) that the cancer penetrated your prostate capsule; similarly you get this exam done as soon as there is any suspicion that you have systemic disease (possible metastases to lymph nodes or bone). Don't depend upon PSA as your only marker. Mutations do occur; these tend to be aggressive, and they may not produce PSA. Instead these mutations may produce other markers such as CGA, NSE, and CEA. Get these measured at time of diagnosis and routinely thereafter if results are elevated. Don't take chances. Look what happened to me! My PSA went way down, but very likely I have metastatic disease.


Voices in PSA Rising Magazine

Living in the Nanosecond:
My Prostate Cancer Clock

By David Nawrocki

Yeah, I've been arrogant. Not in the sense of the macho guy who flings and breaks a liquor glass over his shoulder and gets in your face with a dare. It began with Polish-American innocence in an industrial Midwest melting-pot neighborhood. I learned ideals like Work hard and you'll get ahead. And Place happiness above wealth. Above the auditorium stage where I went to high school were huge, chiseled concrete words by Lew Wallace: "Character is higher than intellect."
How could this lead to arrogance? Simple enough. My life was exciting, filled with many opportunities and interesting challenges. I never got sick. I managed losses reasonably well. Like Zorba the Greek, I'd find a way to dance along the shoreline of my mind, come what may. "You want to dance? Hopa! Let's dance!" I believed I'd live to be at least eighty. Indeed life would not really start until I reached retirement; for then I could piece together and express in some creative way what life meant to me. I even expected to run marathons in my 70's. I could do that at any time - I just needed to step up my training from my usual jogging.
All this changes on a hot August day in 1997, when, at the age of 62, I lie on my side, pants off, knees up, with a wretched probe going up my rectum - while I wince and hear a Zzzzt each time the urologist takes out a tiny plug of prostate tissue.
Several days later, my urologist says, "You've got an advanced case of prostate cancer." He seems to have an eternal smile and a gaze which does not blink. I opt not to have my prostate removed. My urologist and oncologist put me on what is called hormonal blockade (or hormonal therapy). Good news is that this blockade causes blood levels of the male hormone testosterone to go way down; this in turn shrinks the prostate and kills off those cancer cells which need testosterone to stay alive. My PSA plummets to 0.01. A rough calculation suggests we've killed off about ninety-five percent of the original tumor.
Bad news is that there's another blood marker, called CEA (carcinoembryonic antigen). At time of diagnosis it was slightly elevated. Each month for the past year, it has gone up by almost exactly the same amount.
Surely I swallowed a clock for breakfast and it'll be detected next time I pass through airport security. How else to account for this remarkable regularity? What does it mean? Do I have some mutant cancer clone, which is spreading - but we don't know where it's at?
After about eight months on blockade, once again I'm in my oncologist's office. Now that my PSA has reached its nadir, he wants to radiate the prostate and then implant radioactive seeds in what's left of the prostate. But what about that CEA and possible hormone-resistant clone? I'm aware of a radiographic imaging test called a ProstaScint, which does well at ruling out what's called systemic disease (fancy words which mean it's too late for surgery or radiation). But I'm not aware that this test is available locally and is covered by my HMO insurance! So I balk at radiation and suggest chemotherapy, and my oncologist balks at that!
At last he orders a ProstaScint. The test suggests extensive nodal disease, some deep within the abdomen. My urologist (with his eternal smile and blinkless gaze) informs me I have a year or two to live. Of course, I might beat those odds. We'll see ... I know of one woman with cancer who was told she'd die in a few months - and for the next 6 years, she told her loved ones she was sure she was going to die that month. Why the oncologist did not order a ProstaScint a lot earlier is another matter. As I write this I am scheduling surgery for a nodal biopsy and possible chemosensitivity testing (as a guide to what kind of chemotherapy might work).
I don't show emotion about all this to others - I remain amazingly calm, though privately I've had brief and intense moments of grief. I am totally without cancer symptoms, so my cancer-reality fifteen months after diagnosis is like a dream. It is, isn't it? Won't I just wake up any day now, any day, any day ...? Nah! I live on borrowed time. Inside a thin, opaque veil. Outside is an incomprehensible immensity of some kind which at some point will bear down and tear through: it might be gradual - or a massive rupture.
I cannot live inside that reality for very long. Thus I adapt, in my own way, with what I experience as an amazing, unexpected strength. I suppose it's denial. Sometimes I wonder, "Why haven't I freaked out yet?" When I get racked by pain I'll find out more. For now, it's quite simple to say, "Well, it's just my body gone awry." How brave am I really?
Measured by galaxy time, I live for a nanosecond; I am a glitch in history ... except for those who know me, love me, and will remember me, and those loved ones who will hold on to a few things having sentimental value. This too is a hard reality to bear - yet I am daily, hourly, aware of it. I belong to a disease tribe. Those "lucky ones" outside my tribe live a nanosecond-life too, but it just seems longer. They take themselves and small affairs very seriously. I did too. A shift is taking place. I am more than ever on the outside looking in.
There are times I drift into a state like theirs. Time expands. A day is long. I take my affairs very seriously. And then I run into someone who knows my condition. Out of genuine interest, they ask me how I'm doing. I appreciate their interest, but it jolts me back into my cancer reality. There are times I welcome the relief and comfort of going to a grocery store and having the checkout clerk ask me, "How are you?" That youthful smile, those bright eyes, that innocent, confident, unknowing turn of head - these things lift me up as I reply, with my own broad, cheerful, and happy smile, "I'm fine, thank you!"

An Urgent Plea
I'm not a physician, so what follows is just my personal opinion. You be me for a moment, except this time we'll get it right! Once past 50, you start by getting annual PSA's and digital rectal exams. If you come from a family with a cancer history, you start these at age 40. If you do develop prostate cancer, get a ProstaScint exam if at time of biopsy (or surgery), it appears (or you have evidence) that the cancer penetrated your prostate capsule; similarly you get this exam done as soon as there is any suspicion that you have systemic disease (possible metastases to lymph nodes or bone). Don't depend upon PSA as your only marker. Mutations do occur; these tend to be aggressive, and they may not produce PSA. Instead these mutations may produce other markers such as CGA, NSE, and CEA. Get these measured at time of diagnosis and routinely thereafter if results are elevated. Don't take chances. Look what happened to me! My PSA went way down, but very likely I have metastatic disease.

© 1998 David Nawrocki. All rights reserved.
David Nawrocki is a high school dropout with two degrees in physics from Indiana University and a Ph.D. in biophysics from the University of Illinois. He has worked variously as a dancer and acrobat, neurobiologist, solar research scientist, energy consultant, new products engineer, and college instructor. Always interested in human service, he returned to graduate school at the age of 55, completed an MSW program, and for the past five years has been a clinical social worker and psychotherapist. He takes great pride in his three grown children, Sarah, Elizabeth, and Michael. He is writing a book, "The Gift of Illness: One Man's Journey with Cancer".

http://www.psa-rising.com/voices/david_nawrocki.htm

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