"I'm not clear on your timing. Did you wait 3 years between diagnosis and treatment?" A friend asked me this, a fair enough question, one that others might also have. So I am sharing my reply with the world. Those who want to call me stupid, please feel free, though offline will be easier to take.
Yes, I did. Initial diagnosis (dx) was due to a slightly elevated PSA. It led to biopsy (bx), which came back Gleason 6, small volume, PSA less than 4. I was 49. Nobody seemed really interested in treating me. Nobody in New England would touch me with radiation because, despite what people in the online patient community might say, one of the top uros in the world said the 10 to 15 year data for radiation is not as good as radical prostatectomy (RP).
Looking 35 when you are 50 does not make docs want to jump up and turn you into an incontinent and/or impotent man. Docs are human, and they are men. And they also get caught up in the emotions of watching a young couple married just 10 years with a 9 year-old daughter. I looked 35 and Terrie at 43 looked 25 and Katie looked like the 9 year-old that she was.
Even our business was young. I had just started my own business and could not go through a long recovery. And you had better believe that those factors also play upon the docs and the nurses. All of us—me, Terrie, my docs, the nurses, friends, family—all of us simply hoped that the odds would stay with me and I would need no treatment until much, much later.
You have to be there to see the sadness in the eyes of the human beings who will treat you when they consider how young you are ... how young your family is ... how probable side-effects will be. There is always that pregnant silence when no one knows what to say next when a young family is involved. That plays as much as the scientific probabilities.
About that time, the Swedish studies on Watchful Waiting were the raging vogue throughout the PCa community. What a wonderful idea. Took me off the hook and took the uros, med oncs and rad oncs off the hook. And I was a cheerful watchful waiter.
Moved my business home to the South East. PSA readings stayed below 3.0 for two years, rarely moved. That is what everyone was watching, although my youngest uro said he didn't give a damn what the PSA was, I had PCa and it should come out.
My world class (for real) uro, on the other hand, said treatment only saves the life of one out of ten. Nine out of ten either have a cancer that will be a slow mover and they will die of something else ... or the cancer is already out of the prostate capsule and into the system and if it is aggressive it will kill the man. One in ten, he said, has a very aggressive cancer yet is lucky enough for that cancer to be contained withing the capsule at time of dx so that aggressive treatment can indeed save him.
Problem is, you don't know for sure if you are the one in ten. America over-treats and Europe under-treats, using the same numbers to justify each approach. In fact, in December of 1993 at the world conference of urological gurus in Washington, DC, there was a healthy debate between the European doctors who couldn't believe that US doctors would mess up the lives of 9 to save 10. American uros couldn't believe that European docs would let one man die just to preserve the quality of life for nine.
For late 1993-early 1994, I was a very well educated and informed watchful waiter. My PSA was within "normal" limits and I only had one chance in 10 it would turn aggressive on me ... and if it did, the 87 chances out of 100 that treatment would nail it as soon as the PSA started up. At the time, the odds of dying from Watchful Waiting were lower than from surgery or complications, unless I pulled a form of PCa that made PSA a poor marker. No one talked about that.
The existence of forms of PCa that do not produce much PSA was a critical hole in my education. After 2.5 years, the PSA bumped up to 3.85 and my South East doc got nervous. So I called my guru in New England and he asked me what the second biopsy had shown. I asked "What second biopsy?" "The one you should have had after one-year of low PSA production knowing you have prostate cancer," he replied.
I had always volunteered for risky assignments in combat and had developed my reputation by pushing the envelope at much greater risk to myself than to anyone else. I had recovered from terrible situations, I had always landed on my feet going full-speed ahead. Given the numbers and the odds, and based on what was known ten years ago, mine was not considered a foolish decision.
Much more is known now and I want to see the comprehensive data that shows brachy on a man in his early to mid-fifties is equal to surgery 15 years later. There is no such data and therein lies the risk that younger men take. I took it and lost. I planned to win, but I pulled the kind of PCa that doesn't put out much PSA—making PSA a bad marker for cancer progression. After EBRT and Seeding, my PSA never dropped below 2 and when it rose to just under 4, the androgen deprivation began.
I was projected to die sometime between 1999 and 2002. Now the docs have stopped trying to predict. The dance with the bear goes on.
I think it is important that any young man who decides to take the same risk that I took—looking at the same 99 to 1 probabilities of success—truly understands that out of every 100 guys, one will draw the short straw.
In my head I understand that—but no one stood up and told me what the failure would mean to me before I was 60, to my wife and to my daughter. Would that have persuaded me otherwise? Maybe, maybe not. It sure would have given Terrie more ammo than she had to fight for RP—and she has the ability to change my mind when the facts look for sure like they support my position.
The problem was that in the early Nineties there just weren't that many guys who had been watchful waiters at 50 and in trouble at 53. There were not that many guys who had brachy at 53 and had it fail. Today, there are a few of us around to speak to other guys in their fifties.
I taught my children one simple rule for taking risks: can you live with the downside and recover? If you can and the upside is that important to you, go! But regardless the upside, never go if you cannot live with the downside.
"How can you know?" they would ask. My answer was to engage heart and brain and try to really feel the impact of the downside. And once you have and you know you can deal with it, then move ahead and never give the downside a second thought ... you already have dealt with it. That is what courage looks like. Failure to vicariously live through the downside, anticipation of pure success, is foolish, not brave.
We make too big a deal out of the science on the internet and simply duck the emotions a man and his all-man team of physicians are having with this decision. Why? Cause men rarely speak up and they let the women in their lives speak for them ... and that introduces a perspective that is neither better nor worse, but it is not the man's. Sorry ... but that is always in play.
Men will apply their individual "world view/perspective" combined with their collective "world-view/perspective" as men. Then our women hear with their individual and collective "world-view/perspectives" and then speak to an unseen audience. It is much more powerful than the old "whisper game" because the differences in individual and collective perspectives run deep.
Who speaks for science? Hopefully all of your doctors and those you visit for additional opinions will share the science with you. In my case most of my docs did a great job of this ... though Dr. Strum was both more thorough and more concise. Some docs even recommend places to go for further research, give out educational books (real books! not pamphlets) and videos.
The problems begin when they bring the science to bear on you. After the head of the urology department at one of the nation's finest medical schools explained to me why immediate treatment only saved the lives of 10% of PCa patients, he looked at me and said "The problem is that for any single patient it is never a question of probabilities. Right now, you are 100% in the 90% for whom treatment will make little difference; or you are 100% in the 10% for whom immediate treatment is a matter of life and death; and we don't know which one you are 100% in." That really qualifies the science a bit.
Or when the head of oncology at a world renowned medical institution says, "Our top rad onc says he would never touch someone your age with seed implants or radiation." (I had just celebrated my 50th birthday.) "At this age it is RP or watch and closely monitor."
When I decided to be a watchful waiter, my uro said to me, "There is a one in ten chance that your PCa will become aggressive. If it does, there is a one in ten chance we won't get it in time. Again, you are 100% in the one or the nine in each case and I do not know what is the 100% reality for you." Surely I am not the only PCa patient who has experienced such candor from his docs! Could be true, though. All of these docs were in New England and 80% of my docs down in the South East were never this straightforward in presenting the "science" to me.
I make it possible for a man to vicariously live through the downside and then to make a truly informed and courageous choice. It might be RP, it might be SI, it might be herbal tea ... but it will be truly informed, not just "science informed."
The issue of terminal illness runs even deeper. It is a fresher perspective and, therefore, quite powerful. It emerges from the cognitive dissonance that is inevitable when someone tells you that—barring a miracle—your cancer will not be cured and may well kill you. I used to tell Terrie that it was like a veil drops between the terminal patient and the healthy world. The patient lives in a place that the healthy cannot conceive and would not wish upon the healthy. Yet the patient retains a clear understanding of the healthy world he/she once lived in.
Lately I have come to see it more as a one-way mirror. The patient can see the healthy world in which the patient once lived, but the healthy see only a reflection of the healthy world that they understand. Either way, to be the one that is terminally ill carries frustrations of communication. These frustrations are moderated by time, but the communication difficulties continue.
Evidence that it is more than man-woman is the difficulty men treated for and cured from PCa have truly understanding those who have been treated and treatment has failed. Some of the "cured" work heroically to understand and to help, just as healthy partners may continue to work hard to understand, to teach, to equip and to help. So there are some major benefits to the sliver of a barrier of understanding that exists between the dying and the healthy.
Even in combat, there are times when you really contemplate the immediate loss of your life ... right now. Then the danger passes and your own death becomes an abstraction once again.
The omnipresent knowledge of death creeping closer is a new experience for the terminally ill ... and it is so difficult to communicate that experience to the healthy in ways that lead to understanding and not pity, or nervous responses, etc. It is quite an experience in so many ways ... not all bad ... but we stop trying, I think, to communicate that experience out of consideration for the healthy. After all. they cannot be where we are ... and we wouldn't want them to be ... and they can't help that.
Burns Mixon, December 2003. All rights reserved.
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