Prostate cancer is an unusual topic on a writer's website. But then my journey to find a cure was unusual. Perhaps for someone, somewhere, who finds himself on the same journey, my experience will be of some help.

The walls of my urologist’s office are thin and I can sit in the waiting room and mark his passage and he goes down a nearby hall from room to room, from patient to patient. "Well, your PSA is stable," he says in his booming voice as he opens a door. A few minutes later there is a quiet exchange in the hall and I hear the slow footsteps of the patient making his way toward the receptionist’s desk. I picture the doctor standing before the next room, scanning the patient’s chart. He opens the door and I hear, "We need to do a biopsy on you" or "I’m afraid the news is not good."

We in the waiting room pretend to be engrossed in magazines as we listen to detailed and highly personal medical discussions a few feet away. We hear every word from the doctor but usually only a subdued murmur from patients. When patients leave the small examining rooms and exit through the front office, they always look straight ahead. Often there is pain in their eyes.

When men in their 50s and 60s visit their urologist there is always some anxiety, some nagging remembrance of something read or heard somewhere that if a man lives long enough he will get prostate cancer. And deep in a man's psyche is the concern that this may well be the visit when he learns he is now old enough.

The first intimation that I was approaching that life-changing point came in the summer of 2000 with the onset of low backache, pain in my legs, testicular ache, and the general awareness that something, somewhere, was wrong. I was traveling frequently and on long flights as I conducted research for my new book: Boyd: The Fighter Pilot Who Changed the Art of War. The book is important to my story, just as any man’s business is important in his life. It is important because John Boyd, the subject of the biography, died of prostate cancer. It is important because I was getting older. I was the author of 10 previous books, all save one on the mediocre side. I sensed the Boyd book would be a breakthrough and I was consumed with making it my best work. I did not have time for a medical detour.

Little did I know that I was about to begin an arduous and confusing journey, a journey that at times seemed a sojourn in hell, a lonely journey where I was saddled with the awareness that the final destination may not be of my choosing.

Because I had two younger brothers who had prostate cancer, my urologist considered me a high-risk patient. The most common examination to detect prostate cancer is a procedure loathed by most men: the digital rectal exam (DRE). Many prostate cancer cases are indicated by a nodule on the prostate that can be detected by a doctor’s probing finger. In my case, every examination was negative. But my PSA, a blood test that can be an indicator of prostate cancer, had been creeping slowly upward for a year or so. I knew I had a greatly enlarged prostate; in fact, I joked that my prostate had its own zip code. An enlarged prostate can elevate the PSA. And prostatitis, an inflammation of the prostate, often accompanies an enlarged prostate. Prostatitis also can elevate the PSA. Long periods of sitting, such as I had been doing on frequent flights, often cause prostatitis; a syndrome known as "truck driver's disease."

I put on an optimistic face and decided my troubles were due to an enlarged prostate and prostatitis. The DRE was negative but lab results showed my PSA had risen to 4.8. Anything above four can be indicative of cancer.
My urologist said detecting prostate cancer is a three-legged stool: the DRE is one leg, the PSA test another, and a biopsy the third. The negative DRE was cancelled out by the rising PSA. A tiebreaker was needed. I had to have a biopsy.

Usually this procedure is done in a doctor's office. The normal biopsy consists of an ultrasound device in the rectum which guides the urologist as he uses biopsy needles to take samples of prostate tissue. The usual number of samples is six, but because my prostate was so large, my doctor needed more. I wanted to do the procedure as soon as possible, but the earliest it could be scheduled was five weeks away. In early July I went into the hospital, was put to sleep, and the doctor stuck a needle into my prostate 13 times.

After this procedure there is a very strong desire, perhaps even an obsession, to know the results. A man needs to know if he has cancer. The stress level is very high as one awaits the biopsy results. But, coincidentally, my urologist left on vacation the day after my procedure. Nurses are not allowed to pass along pathology reports. But I had to know. So I went to a good friend, a doctor, who called the urologist's office and obtained the results: all negative. I was cancer free. An enlarged prostate and prostatitis were the problem. I felt a great sense of relief and went back to my work with renewed vigor.

In December I had another PSA and found it had risen to 7.8. By mid-May of 2001 it was at 8.9. My urologist said it was time for another biopsy, a very thorough biopsy to settle this nagging question once and for all. So in early June I had another biopsy; this time a trans-perineal procedure with 23 needle sticks. Again, coincidentally, my urologist left for vacation the next day and I had to wait for his return more than a week later to find that, again, all was negative. And because the biopsy was so extensive, he was reasonably sure I did not have cancer. Two legs of the stool — the DRE and the biopsy — were negative.

But by then I had other problems. The assault on my prostate caused a serious infection, a temperature of 103 degrees, and — seven days after the procedure — urinary retention. This is an extraordinary painful condition. I called my urologist’s partner one morning about 4 o’clock asking if he could catheterize me. I had been a patient at this practice for more than 10 years and was surprised when he told me to go to an emergency room. The experience only added to my sense of confusion and the growing awareness that I was walking an unmapped path through a strange land. I wore the catheter a week and then removed it myself; a step that annoyed my urologist.

The procedure and the aftermath took me away from work for more than two weeks. But I was again deemed cancer free and returned to my research. I went on a regimen of various antibiotics to treat what might be a bacterial prostate infection. The symptoms persisted. Then more antibiotics for what was diagnosed as epididymitis — an inflammation of the spermatic duct system. Then a painkiller for what might be an abacterial prostate infection. I sensed the doctor really did not know what was wrong and was trying out every arrow in his quiver.

The thought occurred to me that doctors, especially good doctors, must practice their profession with a great deal of anxiety.

A persistent fear grew in me that I did have cancer. Doctors place great significance on a genetic predisposition toward cancer.

In early November a blood test showed my PSA was still climbing: now it was 13.3. The velocity of the climb was relatively slow and again was attributed to prostatitis and an enlarged prostate. But when a man's PSA passes 10, doctors become concerned. Granted, an abacterial infection or prostatitis can cause an elevated PSA, but with a PSA above 10, cancer is almost certain.

I confided all this to the man who had written an earlier biography of Boyd, a man who had to stop his research and find treatment. He is a Harvard Ph.D. and did extensive research before deciding on a procedure that involved radiation followed by radioactive pellets implanted in his prostate. He suggested I begin searching for a treatment. But now I was working 10-hour days, seven days a week and brushed him off. I told myself I had prostatitis.

I went into a frenzy of work and finished the book in the fall of 2001. In the spring of 2002 my urologist suggested another biopsy. The first thought that came to mind was, "If it’s spring, let’s schedule a biopsy." I realized I was on a merry go round. This could go on for years. I wanted a resolution. I was no longer a patient, an individual; I was a rising PSA and a testing ground for every possible test and procedure. But nothing was being resolved. So I told the urologist I would consider it and then, after much research, called a urologist in another city. He was highly recommended by my friend who is a doctor. And he is considered the preeminent urologist in the town where he practices.

He performed the most thorough DRE I've ever had and said he found a nodule.

It defies all logical explanation, and it may be that I was whistling past the cemetery, but I did not believe he found a nodule. I told him of numerous DREs in recent years and that doctors had found nothing. "They're not as good as I am," he said emphatically. "We need to schedule a biopsy."

I told him I wanted to think about it. Several weeks later, to my utter astonishment, he called and said it was very important that I have a biopsy. He said he was reasonably certain that I had cancer and he wanted to confirm the diagnosis. I have never had a doctor call me at home and strongly suggest an invasive and relatively expensive diagnostic procedure. And rather than adding to my sense of urgency, it reinforced my belief he had not found a nodule. And if he had, I thought it must have been scar tissue from the 36 sticks of the two previous biopsies or from the massive infection.

When I next visited my urologist, I did not tell him I had seen another doctor. He examined me and said the DRE was negative.

But my PSA was still rising.

I wanted to get off the merry go around and get this situation resolved. I wanted to know once and for all if I had prostate cancer. I went to the internet and read for days about the 14 different ways to treat prostate cancer. I studied everything I could find and became a relatively well informed layman about the subtleties and intricacies of prostate cancer. Then I called the Mayo Clinic and scheduled a visit. I sent them my medical records and the pathology slides — they wanted the slides, not the written reports — of the previous biopsies.

Everything you've ever heard about the Mayo Clinic is true. Never had I seen such utter and absolute professionalism in a medical institution or among doctors and staff. The place is geared for action. I had blood work done about 6 a.m. and an hour later was meeting with a urologist. He said my previous biopsies had been studied by Mayo Clinic pathologists and that the first biopsy two years earlier had been mis-read: I had prostate cancer. The second, more extensive biopsy, still was deemed negative. All of which showed how small, how slow-growing was the cancer. But my first thought was that I had been carrying around a cancer for two years that could have been treated earlier. A great sense of anger bubbled up in me.

The Mayo urologist was very thorough. He performed an extensive DRE and said it was negative. I could not help mumbling something about the expert who earlier said he found a nodule. The Mayo doctor recommended a "saturation biopsy" — 23 tissue samples — to confirm the diagnosis. He said he could do it the following day. I stared at him in amazement. In Atlanta, biopsies are scheduled five or six weeks in advance.

A day after the biopsy — compared with the 7-10 day wait in Atlanta — the results came back. A small part of one of the 23 samples indicated cancer. "If I did not know you had cancer, I would have missed it," the doctor said. "The cancer is near your seminal vesicles, a place very difficult to reach with a biopsy needle." He said my PSA now was 15. The Gleason score, a measurement of the extent and severity of the cancer, was 3 + 3. A score under seven is considered good; that is, the cancer is small, is organ confined, and the prognosis — with almost any of the various forms of treatment — is considered very good.

"The bad news is you have cancer," the doc said. "The good news is that it is so small and so slow-growing that if I believed in watchful waiting, I would tell you to do nothing."

I have to inject here, and this is opinion based on my long journey with cancer, that few doctors believe in watchful waiting; that is, unless the patient is 110 years old and has an intermittent heartbeat.

The Mayo doc recommended several types of treatment. Both were his specialties. One, cryosurgery, is a relatively new form of treatment that I consider — perhaps wrongly so — one step up from witchcraft and is most often a palliative for patients with advanced prostate cancer. The other was seed implants followed by radiation.

By now I had come to several conclusions about the practice of medicine and prostate cancer. First, the term "medical science" when applied to prostate cancer is more hope than reality. I would even go so far as to say the term is an oxymoron. This is not a criticism of the healing arts. It is simply the awareness, and some doctors will tell you the same thing, that much of the medical literature in this area is evolving and contradictory. Some of it approaches fiction.

Second, and this is a crucial point for any man newly diagnosed with prostate cancer, urologists have many years and untold thousands of dollars invested in their practice and in their specialty. If you are under 65 with a low PSA and a Gleason score under 7 — which means you have almost a 90% chance of being cured no matter what course of treatment you pursue — a urologist will almost inevitably recommend surgery. A urologist is trained as a surgeon. For him the gold standard is a radical prostatectomy, a major operation that removes the prostate and can have impotence and incontinence as side effects. And, if the doctor is not aggressive in removing all the margins, the cancer can return in an advanced form.

If a urologist recommends a treatment other than surgery, it can mean he is not sure of your chances and he wants you to go elsewhere so his success rates will not be lowered.

Still another revelation: if you are a man with a newly diagnosed prostate cancer, the dumbest thing you can do is to place yourself unreservedly in the hands of your urologist. You are facing a potentially life-threatening illness and you get one chance to treat it properly. You must do a lot of comparison shopping. You must take charge of your health.

Be warned: some doctors will take offense at this. They think it is presumptuous. "Are you a doctor?" was a question I was to hear many times.

By the time I went to the Mayo Clinic I was beginning to feel comfortable in rejecting medical advice. But one suggestion I did take and that was to have a Lupron injection. Lupron is a hormone deprivation agent; it suppressed testosterone upon which most prostate cancers feed. It has some bothersome side effects. The good news is that I had another blood test not long after returning from the Mayo Clinic and found my PSA had dropped to 3.5.

Lupron often is a palliative for men with advanced prostate cancer. I took it for one reason: it would, at least for a year or so, stop the cancer cold.

And a year was what I needed. I was getting only good news about the Boyd book. I wanted to go on a promotion tour. All this was a jarring juxtaposition of euphoria and intimations of mortality. Every time I became excited about the book, my body reminded me I had a big problem. Every time I dwelled on the problem, I received good news about the book.

As I flew back to Atlanta I made up my mind to tell only my wife and maybe a few close friends about the diagnosis. I come from a small town where people have little to talk about other than their maladies, and I long ago resolved never to talk about any illness that might befall me. Plus, by nature I am somewhat like an old hound dog in that when I am ill I want to curl up in a corner somewhere until all is well. And finally, I have seen the look on the faces of people when they hear that someone has cancer. It is a look that says they are planning to go to that person’s funeral. I did not want that sort of thinking weighing upon me.

Upon my return from the Mayo Clinic I continued my research about the ways to treat prostate cancer. Many I discarded as being part of medicine’s evolutionary climb. Remember that only two hundred years ago doctors believed night air was poisonous and that "bleeding" was a splendid treatment for almost every ailment. So my search was accompanied by what should be an obligatory part of every man’s search: a healthy dose of skepticism and the awareness that medical science is written in the sand and that doctors are human.

Because a man searching for a cure will hear so many contradictory treatment suggestions from so many different doctors, he must, in the end, make the decision himself. For patients like me, men with early-stage organ-confined cancer, several treatments have the same cure rate. But they have vastly different side effects. It is men who ignore their symptoms, men with advanced prostate cancer, who have few options.

Through friends who were doctors I gained access to a dozen or so medical studies about prostate cancer. I found that prostate cancer is a significant risk factor for suicide among men 65 and older. I found that doctors are only just beginning to recognize the emotional and psychological devastation that come with a positive prostate biopsy; with having to make treatment decisions, with balancing quality of life issues and survival rates. Most urologists have little awareness and less training in dealing with a man’s psychological problems after diagnosis. Prostate cancer, as one study pointed out, is not a single event with a clear beginning and end, but rather a series of very difficult challenges that can bring even the strongest man to his knees. I found what I already knew, that the highest stress levels in a man are after a prostate biopsy but before he knows the results. When a man is diagnosed with prostate cancer, he is beginning a life-changing journey. I also discovered the books of Dr. Bernie Siegel (Love, Medicine & Miracles and Peace, Love & Healing) which were to prove of immeasurable value to me during my treatment. Dr. Siegel, in my judgment, should be declared a national treasure and his books mandatory reading for anyone diagnosed with cancer. Curiously, the doctors to whom I mentioned Dr. Siegel smiled and nodded in indulgence, but made it clear they had no interest. People with cancer like Dr. Siegel, but not his fellow physicians.

By now I had the bound galleys of the Boyd book and I studied it day and night, searching for every typo, for every factual mistake; I wanted it to be perfect. I did not realize it until a doctor friend pointed it out months later, but there was a clear parallel between the detailed almost obsessive manner I researched prostate cancer and the way in which I studied the galleys. "You're a very anal person," he said.

I typed "prostate cancer" into a search engine and the first item that popped up was from Radiotherapy Clinics of Georgia. It is the most thorough, most informative, and most professional web site of any prostate cancer treatment center that I found. Granted, all of its information is slanted toward its own form of treatment, but it remains a splendid site for anyone with a new diagnosis of prostate cancer.

I visited there early one morning and found several dozen men in the waiting room. After a relatively short wait I was called for a few tests and my initial consult. Because my prostate was so large, the doctor said seed implants would almost certainly send me into urinary retention, perhaps for several months, and that I needed a laser procedure to remove obstructive prostate material from pressing on my urethra. He referred me to a doctor who said he would do the procedure and that several months later I could have the RCOG treatment. But by now I had read enough that I knew there was a more modern form of the laser treatment. I found a doctor in Charleston who uses the treatment but who said he would never use it for someone about to have radiation treatment.

So seed implants followed by radiation was not an option for me. My treatment choices had shrunk.

I thought proton beam radiation might be an option. But Massachusetts General Hospital, the only place on the east coast that has this treatment, says it is not used for prostate cancer.

Another option closed.

I discounted surgery, which almost all urologists call "the gold standard" of treatment for prostate cancer because, although I am in splendid physical condition, this is a major operation, up there with open heart surgery, with too many chances for catastrophe on the operating room table and in post-operative side effects.

Still another option closed.

About the time my book came out to glowing reviews, a doctor friend recommended I explore radiation; he said remarkable advances have been made in radiation treatment in recent years. And that is how a journey that began at the Mayo Clinic and explored possible treatments from New York to Boston to Texas, ended at The Emory Clinic about 10 minutes from my house. Treatment was scheduled for January which gave me more than two months to enjoy the second and third printing of my book and an increasing number of splendid reviews, articles, and television appearances to talk about the book.

Coincidentally, I had a six-month checkup scheduled with my urologist about this time and told him I had chosen radiation as a treatment. He pushed away from me on his rolling stool until he was up against the far wall of the office. He grew visibly angry and said if he had prostate cancer he would much rather have surgery and see his cancerous prostate up on the shelf in a jar than to know it was still in his body. He said future generations would thank me for using a treatment, the end results of which are relatively unknown. And then he dismissed me with "Well, come see us if we can ever help you." He never shook hands, never touched me on the shoulder or on the arm. And I realized that, in all the years I had been his patient, he had never shaken my hand.

The power of touch is of crucial importance to patients, but especially so to cancer patients. A doctor should reach out and touch his patients in some way.

I realized also that if I had not done so much research, my urologist’s comments would have been devastating.
But I knew he was angry because I had not chosen him and not chosen surgery. I went to Emory secure in the knowledge I had chosen the treatment that was best for me.

The parking deck between Clinic A and Clinic B has seven levels. Ground floor is Audubon and then the levels ascend, using different colors and the names of birds to orient visitors to their parking spaces. From Audubon the levels go up through bluebird, cardinal, dove, eagle, finch, and the top deck is gull, which is where I parked perhaps 80% of the time. I called the parking deck the "birdcage."

My first visit to radiation oncology was sobering and reminded me again that I was involved in a very serious business. "Rad Onc," as it is called, is in a tunnel under the Emory Clinic. When I checked in at the desk and gave the name of the doctor I was to see, the attendant shook her head and said, "All new prostates go to ..." and she named another doctor. I wanted to tell her that I was more than a prostate and that mine was anything but new. But, sadly, that is the way of most hospitals: patients have no names and no identity. They are their disease. This is something I fought throughout my treatment. Every time some referred to me as "a prostate" I told them my name.

Once my initial consult was completed and I was assigned a treatment schedule of 2 p.m. each day, the nurses told me to no longer stop at the front desk but to "go on back to the fish tanks and wait there." Down at the end of the hall is an alcove lined with perhaps 20 chairs. A large fish tank partially blocks the alcove from the hall.

My life, from January 15, 2003 through March 26 revolved around the drive to Emory and the walk from the birdcage to the fish tank. I never parked in valet parking at the door of the clinic as did many of the patients. I parked in the birdcage and walked. I wanted to maintain as much a semblance of normality as possible.

But several times I had to take off a few days and go fishing; purely mental health days to help me cope. The radiation itself I breezed through with virtually no side effects except for fatigue, which gave me a good excuse for a long afternoon nap. But the emotional side effects were more serious. Several times as I lay atop the high table and the big whirring gantry moved over my body, buzzed as it emitted the radiation, whirred into a new position, buzzed, whirred, buzzed, whirred, buzzed, whirred, I broke into uncontrollable sobs.

It was fly fishing that enabled me to press on; fly fishing and Bernie Siegel.

By now my anger at the mis-diagnosed pathology report two years earlier had abated. A friend pointed out that it allowed me to work on my book uninterrupted and that the cancer was so small and so slow-growing and still organ-confined that the two-year period caused no discernible growth in the tumor. The pathologist had actually done me a favor.

My treatment ended and I picked up my life and moved on, knowing I had changed in fundamental ways. For one thing, my emotions are very close to the surface. I was on national television talking about my book and suddenly began crying. Recently my niece was married and I cried more than her mother. I can’t explain this.

One thing I wish I had done differently. I wish I had told more people I had cancer. Their love and their support would have helped.

Am I cured? I do not know. What I do know is that the Boyd book was so successful it enabled me to obtain a new two-book contract. So I press on, knowing that I have fewer books in front of me than I do behind me. I am determined to make every book I am privileged to write as good as I can possibly make it.

My first PSA after treatment was 1.4. I am scheduled for another test in six months and I am haunted by what it may reveal. I know it is not good to chase the numbers, to watch them obsessively and pray they do not start rising. It is not good to look over my shoulder and imagine that the cancer is chasing me.

Every day that fear lessens. Every day I grow more grateful for all that I have learned since I was told I had prostate cancer. Every day my focus shifts more and more to the book on which I am working. Research often takes me to Florida. I try to make time for fly fishing on every trip.

TREATMENT FAILURE

After radiation treatment for prostate cancer, three consecutive PSA increases are considered a treatment failure. It is the same in clinical studies: three consecutive PSA increases equals a treatment failure. Patients who have radical prostatectomies and patients who have radiation treatment have about the same rate of treatment failure: roughly 20 per cent. No one seems to know the reason. "Bad luck" was the most scientific reason I could get when, in early 2005, I became a treatment failure.

News of treatment failure is more of an attention-getter than is the news that one has cancer. With the initial diagnosis comes treatment and the hope of remission. With treatment failure, it’s hard to put a good spin on it.
A person tends to think in one of several ways. He can say, "Well, I’ll be like Linus Pauling and beat this thing." Pauling was diagnosed in his 70s with advanced metastatic prostate cancer but lived, he said because of massive doses of Vitamin C, until he was 93.

This is a possibility. But so is a winning lottery ticket.

One can also be aware that prostate cancer sometimes is slow-growing. There are thousands of men walking around with prostate cancer who will die of something else. I could be struck by lightning or run over by a dump truck before I die of prostate cancer.

Always possible. But actuarially this too is unlikely.

I want to be realistic; to go with the numbers, with probabilities, with science. Unfortunately this is one of those areas where medicine is more art than science. I’ve talked with three doctors about this and there are no solid answers. One doctor says I could be in trouble a year from now. Another says it may be as long as seven years. A third is not even sure I am a treatment failure.

So I remain a pilgrim in an unmapped land.

But one day, quality of life issues will come into play. And while I do not know what I will do until that time comes, I am not sure that using drugs to postpone the inevitable, especially when those drugs can cause the end to be without dignity, is a good idea.

In the meantime, this news does tend to focus one’s attention. But not in the way I expected. I wish I could say I have a renewed appreciation for how blue the sky is or how sweet the flowers smell. But I don’t.

By and large, things remain pretty much as they were. On occasion, I still have too much to drink. More often than I like, I tend to be a bit of a smart ass. And I am still one of the most impatient people on earth.

One difference is that I am making plans to take several fly fishing trips I’ve long dreamed about. Another is that I am spending longer hours at my work. There are several more books I do want to write.

And ever-present in my thinking is the fragment of a poem read long ago:

It is 2007 and I have begun seeing a medical oncologist.

Oncologist.

Now there is a word I dislike.

Dr. Vassilly Assikis knows all the numbers and statistics that apply to people with recurrent prostate cancer. He knows that before I visited him I considered and rejected almost all treatment options. One reason is because I want to continue working and to maintain a certain quality of life for as long as possible. Another reason is because I believe many of those treatment options prey on false hopes and – in the long run – do little more than provide revenue to doctors.

Dr. Assikis is a kind and compassionate man, but the thing I like most about him is his honesty. I ask a straight question, I get a straight answer.

He told me that the dosage of radiation I had during treatment was sufficient to cure the prostate cancer. That it did not do so shows the cancer had spread beyond the margins before treatment. And this in turn goes back to the two misdiagnoses of the biopsies.

Sometime this year I will begin taking a drug, the side effects of which can be burdensome. The effect I fear most is diminution of cognitive ability. That happens after two or three years of using the drug. So once I begin the injections, I know that the book I am working on may be my last.

(There are people out there who, when they look at some of my books, may wonder if I have not been taking the drug for decades.)

The odd thing is that I have never felt better, never had more energy, never been more enthusiastic and excited about my work, and never had a surer sense about the quality of my writing.

I am at work on a new book now, and after every research trip I look forward to visiting Moonpie Studio, the small place on the Georgia coast where I do most of my work. Occasionally I put my skiff in the water and go fly fishing.

But sometimes I just get in the boat and ride down the creeks and rivers that wend through the marsh until eventually I slow and stare out over the vastness of the sea. I am not yet ready to take my frail craft into that great unknown.

But one day I will.

87 Robert Coram. All rights reserved.
Revised: 03/03/08.