Paul Shapiro finds out he has Prostate Cancer! Call him using Netmeeting. Use e-mail to schedule time.
(Requires Internet Explorer)
or

If there ever was a time to get the shock of my life, it was when I was told by a seriously practicing urologist, "I am sorry to say this, but you have prostate cancer."

The mind-boggling traumatic feeling that resulted from those words is impossible to describe. I all but went into shock because I had no idea what this meant. It seemed like I was being put on Death Row without even committing a crime. I was in a daze.

To say I was stunned puts it mildly. My weight dropped fifteen pounds in the next two months. I resurrected my beard and let it grow.

When the urologist said that even though he was a surgeon, he could not recommend surgery because of my "old age" (70) it was like a double whammy, Bang, Bang. "You've had 70 good years." My God!

How did I arrive at this point? My regular physical exams had not indicated that I should do anything other than to be aware of a enlarged prostate gland. But a medical development around since 1987 led my regular physician to conduct a special test. He told me following a pre-cataract operation exam that my prostate specific antigen ("PSA"), was 5.0.

PSA is something the prostate gland produces. When cancer is developing more of the stuff is produced. So when I went back to my doctor six months later and it had gone to 7.6 I was advised to see a urologist.

What can YOU learn from this? Break away from your computer. Get a PSA test at least annually, and if the number has risen by any amount, regardless of initial value, also check it out with an urologist. As the highway signs used to say, the life you save may be your own. Prostate cancer is not contagious -- you get it or you do not.

What has this got to do with computers, CPCUG, and you readers?

Well, if you are male (most of you are, most being over half), and over fifty, then it could mean that your computer days are numbered. You know, like 3652 days for each of your remaining decades. Of course you know that, but who in their right mind seriously thinks about such things.

But if over fifty, I urge you to get from your regular physician at least two PSA tests each year (at six-month intervals). If the result (the number referenced above) increases even a small amount on the second test, that is a warning sign that more specialized medical consultation should be sought.

The test itself is a routine blood test. It can be taken separately or in conjunction with a regular physical examination. PSA, measured in nanograms/milliliter, is a very likely marker for the presence of prostate cancer. Be concerned if it is over 4 ng/ml.

Now I think about prostate cancer all the time, not just twice a year. My computer activity is no longer the focus of my life. Staying with you is.

It was not my original intention to include here in a MicroLetter my personal health problems: I did not think it proper for this kind of forum. The idea of writing it down for here, much less "going public" was furthest from my mind. I was just not up to it. Staying alive was then, and now, the main consideration.

But I have not been uninvolved with the Capitol PC Users Group, both during the last seven years as an Officer, and before that. In my early reluctance to burden other members with my personal problems but in an attempt to convey the idea that my participation in the immediate future would be diminished somewhat, for reasons really unknown to me, I initially said that "health" was constraining my continued participation. This ambiguity led to a confusion and concern that is better served, as they say, by full disclosure. Physically I felt, and feel terrific.

PRESERVING SANITY

Furthermore, for my own sanity, I need to talk to people about my problem, feed on their knowledge, and take comfort in the reassurances and guidance that I am receiving. And as I often sat in the back of the NIH Masur auditorium looking down on all of those balding heads at our monthly meetings I realized I just might have some relevant, possible life-saving, information to convey or suggest.

Collectively the doctors had not been doing that, as least not with any assurance. Individually some are better than others. Most surprisingly, in an atmosphere where I am critically dependent on the medical profession I am surprised and somewhat demoralized at how individual doctors praise and recommend their specialty, openly berate that of others. The prostate cancer field of medicine is full of uncertainties and conflicting information. The uncertainties force the doctors to talk about probabilities of things happening, using insufficient statistical data. "You will live five years if you do nothing." "If the recommended treatment is a complete success, you will live at least five years." This is not the best time for me to find out such things. No time is.

Most men who live old enough die with, but not necessarily of, prostate cancer, even without knowing it. That includes many who are hit by a truck, heart failure, or somesuch. If I were a politician I would do my best, now, to cast a vote to help fund increased prostate cancer research so that when "my turn" came and I no longer had the vote something HAD been done about it; in time to save "me".

If you were to read about, and from, others with the disease, such as Andy Grove (CEO of Intel Corp., see Fortune Magazine, May 13, 1996), you will notice a common thread: the doctors all pass the buck to the patient as to what should be done about a "cure", if at all possible.

It isn't always possible. I am reading a gripping story about Cornelius Ryan's unsuccessful fight to live and survive prostate cancer a quarter century ago. One of my favorite authors of World War II material (The Longest Day, A Bridge Too Far), his surviving wife and tapes formed the basis of a book ("A Private Battle") in which his hopes, fears, enthusiasm, and aspirations were strikingly similar to what I have been experiencing. He wanted his cancer kept a secret in a male society ever so reluctant to face and get educated about the realities. One of the surprising things was that among others, he wanted to keep his book publisher, Michael Korda, ignorant of the situation, himself to later acquire prostate cancer and write a best-selling book about it.

Faced with prostate cancer, you are told to initiate treatment immediately: make up your mind what you want to do (surgery, radiation, chemotherapy, or "nothing" (called "watchful-waiting"). If you are truly monitoring your condition as you should, the latter is more than "nothing", it is something, but at first glance, under the enormous pressures of first knowing your condition, it seems like nothing.

Take your time they say. Be comfortable in your choice of treatment. Ha! But only you know allegedly what is best for you. The medical profession does not know, or at least makes it very clear it does not know. All double talk. But I must tell you, this is Reality, and you cannot afford to be destructively critical: you have choices to make, hard decisions.

Do something immediately, but take your time, and above all, be comfortable about your choice? Do something about prostate cancer, and be comfortable about it?

Go to most urologists, who are surgeons, and they will say, have surgery, but not radiation. Go to radiation oncologists, and they will say, have radiation, but not surgery, and again: you are too old. (Seventy is just the wrong age to be, you've got to be under 70 for them to even suggest surgery, over 70 for radiation: its like getting sick on a weekend in America. Come back on Monday.) Or here, you are considered in the 50-59, 60-69, 70-79 category. So I might as well be 79 or over, in which case the medical opinions by and large recommend radiation, hormone treatment, chemotherapy, and watchful waiting, probably in reverse order.

CONFUSION

The confusion compounds. If you want surgery, and are over your mid-sixties, they will go for it "if you insist". If you want nerve-sparing (to preserve your sexuality) find a specialist in the field who is willing to take your case. If you want radiation, do you want external beam radiation, 3D conformal external beam radiation, or brachytherapy ("seeding"). Or do you want cryosurgery? Do you want hormone treatment for as long as it works (what then)? Chemotherapy may be reserved in the event the cancer has spread (metastasized) to other parts of your body and other treatments have failed.

Bone and cat scans had suggested, but not proved conclusively, that my cancer had not spread. A trans-urethral ultrasonic examination and the keen eye of a well-trained urologist showed that it had in fact gotten to the seminal vesicle, outside the prostate gland. Not good.

The doctors I consulted all knew what they were talking about, and luckily for me, always pointed me in the right direction. But it was firmly impressed on me that I personally had to decide what to do, and not take forever in doing that. Here was my chance to control "forever."

What about a combination of many of the above? Hormone treatment before, after, or during treatment?

It took two months after that initial diagnosis to yield to the ever mounting pressures to do something. I decided to go for radiation, initially recommended by the first urologist, and essentially supported by the other doctors subsequently consulted. A few Capital PC User Group members stepped forth and suggested brachytherapy without any of us knowing the extent of my condition, which subsequently turned out to preclude that treatment.

And weeks later (when I wrote the first draft of this article) I was as uncomfortable about that choice as ever. Let me say that for me it seemed the least uncomfortable choice. I would go that far. Today, in extreme hindsight, I can say that I am comfortable with that choice and think it was best for me.

But then a new roadblock: I would need something called hormone antiandrogen blocking (this is not chemotherapy, just sounds like it to the uninitiated, which most of us are). This could take several months, after which the radiation treatment could begin.

But won't the cancer spread during that time if something is not done right away? No, one of the drugs taken during this treatment also inhibits cancer growth during the treatment.

Then why not just take the drug for life and forget everything else? Because the drug is only effective for a year or two, a controversial medical belief. Furthermore I find, by personal research, that your genes come into it: if you have the right genes (called diploid) the temporary inhibitions works; if not, oh-oh. The doctors did not comment on that. I don't know what I had/have. The treatment for me would be the same in any event.

GET EDUCATED

The watchword is, get yourself educated as to what is involved, do medical research even if not otherwise inclined, learn if you can as many of what your options are: the busy-busy doctors cannot always be counted on to make suggestions in your own best interest at every turn, however good their best intentions. A reminder from you, if you can do your homework (and who really can in this situation?), could make a difference: plus you will feel one heck of a lot better about what is going on if you think you know the situation. And hope that you have succeeded in getting the people on your case who know and do their stuff the best way humanly possible.

I am here to tell you folks, that the Internet is one helluva place to perhaps save your life; or at least help you get deep into the act of becoming properly informed. There is among other things, two wonderful mailing lists, one for patient to patient, the other for patient to doctor, that you can subscribe to that puts you in direct touch with doctors and patients who can trade stories, ask questions, and get the kind of information needed to deal with the trauma.

This is done by e-mail and doesn't cost anything.

There are newsgroups.

There are Home Pages galore.

And there are always the Search Engines to get you started when you are so fraught with anxiety that you just don't know what to do or where to turn. Of course the internet is hardly a substitute for proper medical advice. As good as the information is, you have to question everything, check it out with your doctors, follow your instincts, consider what is best for you.

So it has been that several members of CPCUG, who I have still not met personally, have come to talk to me on the phone about their dealings with prostate cancer, where they are now, where they hope they are going. Its a heck of a camaraderie to have, but it sure does help with your peace of mind. I would like to thank some of you in this exclusive and unenviably unfortunate circle for helping and continuing to help me during this trying period. Thanks to you I no longer feel so alone in the Universe.

It has been difficult in the recent months to focus on the computer topics that I have had so much fun writing about. So I thought that one way to ease the burden would be for me to write about what is foremost in my mind, which has generally been the case anytime I sit down at the keyboard. When this nightmare began last year the thought of writing about it for publication was about as remote as could be.

In your readings about the prostate experiences of "surviving" others you may also note that their stories are told well after the fact, after they have completed their treatments, and so far, are living to talk about it. It has said that you are a survivor from the very day you learn that you have been prostate cancer. You are alive. Semantic nonsense.

I was still right smack in the middle of treatment when most of what is noted here was occurring. That phase of my life is now completed.

There is controversy over what constitutes a prostate cancer cure. Although I consider a cup half-full rather than half-empty, am dedicated to the power of positive thinking, subscribe to the self-fulfilling prophecy, I do not believe there is a prostate cancer cure in 1997. The best that I can hope for is that the cancer is in remission for the rest of my otherwise natural life. That will be the case with me. Much of the medical profession that I am encountering (a minuscule amount I must admit) believes that that completely constitutes a "cure". It may all be philosophy and semantics, depending on your outlook.

The uncertainties are great, and so is the promise for the future. New medical techniques are being successfully developed all the time. Will they be soon enough? As short-term life extensions are increased in number and duration by these developments, chances are ever increasing that the "magic bullet" prostate cancer cure will be developed while we are still around. At least while I am! I stake my life on it.

---

Return to Top Menu