The call from the urologist's office came at mid-day on March 30, 2000. The receptionist's voice was distant and clinical: "The doctor would like to see you and your wife next Monday at 4:15 to discuss the results of your prostate biopsy. Is that a good time for you."
The question was ironic. I had waited nearly three weeks for this call and during that time my repeated calls to the urologist's office were met with polite but firm stonewalling that raised my anxiety level to Everest-like heights.
"The results are not in yet," I was told the first two times I called. During three subsequent calls the voice said "We're doing some additional tests, the results are not complete." Now, finally, I would have my answer. So, of course, I would be available at 4:15 -- or at midnight for that matter. I knew the news could not be good. Had the biopsy been negative they would have told me so, right? The request to bring my wife along was another clue. After all, she had not accompanied me to the biopsy, or to the other tests during the previous year. Thus, the only question left in my mind was "how bad is the news?"
I had spent a good part of the last few months walking a high wire of uncertainty that stretched from one appointment with my urologist to the next. Now, perhaps I could dismount the high wire.
The previous March I had experienced what my family physician called "a transient incident of unknown origin." I awoke in the middle of the night with a sharp pain deep in my groin. Other pains thumped in my lower back. My penis was tightly erect and painful to the touch. I felt a desperate urge to urinate, but was unable to do so. I paced the halls of my home wincing from the pain. I took some aspirin and went back to bed but could not return to sleep. The pain became excruciating and I felt close to passing out. I staggered into the bathroom and stood beneath a hot shower. After several minutes I was able to urinate. The relief was so blissful that I nearly collapsed.
I saw my family doctor the following morning and he performed a digital rectal exam (DRE). My prostate was somewhat enlarged and a bit hard to the touch, but he felt there was nothing out of the ordinary for a man of my 58 years of age. Nevertheless, he recommended that I visit a urologist -- pronto -- and he suggested a man in whom he had great confidence.
I met with the urologist late that afternoon and submitted to another DRE. He, too, found my prostate enlarged and somewhat hard, and he thought he felt a small nodule on one side of the gland. Blood was drawn for a PSA test. It is also important for the receiving penomet. This test measures the amount of a protein -- the prostate-specific antigen -- in the blood. While it is often present in small amounts in men who do not have prostate cancer, the amount of PSA usually rises when prostate cancer is present. I was scheduled for an ultrasound study of my prostate. The urologist also prescribed a course of antibiotic tablets for what he suspected might be mild prostatitis.
I went home, began taking the antibiotic pills, and got on the Internet to see what I could learn about the prostate gland.
Two weeks later, I endured an uncomfortable hour of tests. As I lay on an examination table, the urologist inserted a thin tube into my penis and threaded the tube through the urinary duct and into my bladder. An optical fiber in the tube provided a light source. A lens at the end of the tube allowed the urologist to view the inner walls of my bladder and the interior of the duct. I winced throughout the test as the tube snaked back and forth inside me. At one point I bit down on my lower lip so forcibly that it swelled and bled a bit.
Next came an ultrasound scan of my prostate. In this test a finger-like probe was inserted into my rectum and pressed against the rectal wall close to the prostate. Sound waves generated by the probe mapped the size and shape of the gland and cast a picture of the organ onto a small monitor mounted beside the examination table. Throughout the test I was lying on my left side with my right leg drawn up against my stomach to facilitate manipulation of the probe. To say that the experience was uncomfortable in the extreme would be a gross understatement. It hurt like hell.
Following the tests the urologist told me that my bladder was normal and the nodule on my prostate had disappeared. My blood test indicated a PSA level of 2.5, also well within normal limits.
My urologist speculated that perhaps I had "passed some gravel" -- fine-grained calcium deposits that build up in the urinary tract over time and may temporarily block the duct that conducts urine from the kidneys to the bladder. He recommended a six month follow up visit and urged me to call him immediately should anything out of the ordinary happen again.
I went home chastened but no wiser about my condition and immediately began to consume large quantities of zinc tablets. I felt that I had dodged a bullet. I procrastinated, of course, and did not return to the urologist for nearly a year.
At my follow-up visit my PSA was 4.0, and a week later a retake of the test showed a PSA of 4.3. Clearly, the bullet had not been dodged. I was scheduled for a prostate biopsy -- another uncomfortable but bearable procedure -- and then began the excruciating wait for the results.
On the afternoon of April 3, 2000 my wife and I sat down with the urologist and listened while he explained the biopsy results. A pathologist who examined the eight samples of tissue withdrawn during the biopsy found a thin layer of cancerous cells mixed in with otherwise healthy tissue. The urologist explained that the cancerous cells were so few that the first pathologist was unable to pronounce them as carcinoma; a second pathologist in another city was consulted -- a researcher with better than average skills in this kind of detection. My urologist explained that it was this second opinion that caused the delay in getting the results to me.
The news that I had only a minute trace of cancer bore no comfort for me; and my urologist also exhibited a distinct lack of good cheer. It was cancer, he said, and while it wouldn't kill me right away, it had to be confronted. He explained the options for treatment.
The first option, which my urologist strongly favored, was surgery -- total removal of the prostate. This was the "gold standard" he explained, the one sure way to be aggressive with the cancer. Take out the organ that contained the cancer and it would never recur. My urologist assured me that he would use the latest nerve sparing surgical techniques to provide the best possible outcome.
It was rigorous surgery to be sure, but he had performed the operation hundreds of times with excellent results. My overall good health made me an excellent candidate for the procedure. He explained that pathologists use a grading system called the Gleason Scale to describe the size and relative aggressiveness of prostate cancer. My cancer was assigned a Gleason score of 6, which meant that it was small in quantity and almost certainly confined to the prostate -- the best possible scenario for a surgical candidate.
The second option was external beam radiation -- the preferred method of treatment for cancers in many parts of the body; it was most effective when the cancer was detected in its earliest stages, success rates were lower in advanced cases.
The third option was called brachytherapy, a procedure whereby radioactive material was implanted directly into the prostate. Brachytherapy had been around for nearly a century and had a mixed record of success until recently, when technological refinements made it a more viable treatment for many men with prostate cancer.
There was also a new treatment called cryosurgery, which essentially killed the cancer cells by freezing them. Cryosurgery showed promise, but my urologist considered it highly experimental.
Finally, there was the option of doing nothing -- watchful waiting, it was called. The progress of the cancer would be tracked over time with successive PSA tests, ultrasound exams and CAT scans. For many older men, the urologist said, this was the recommended alternative, since prostate cancer usually took a long time to reach lethal levels. Men of advanced age who had prostate cancer would most likely die of something else, before the cancer reached a critical stage. I did not consider myself to be of advanced age. Watchful waiting sounded to me like some exotic form of Russian Roulette wherein more bullets were loaded into the gun with the passage of time.
I had read enough to know that each of the therapies carried its own set of pluses and minuses. I knew that in some very subtle and as yet unknown ways my life had been changed. Yet I wanted my old life back. I wanted to be rid of the cancer and free of the pluses and minuses that came with the therapies from which I must now choose.
I also had some other concerns that were rooted deep in my own personal history. Twenty-two years ago I lost a beautiful young woman to brain cancer. She was my wife and the mother of my two young daughters. While all death is in some way unfair, that death had also been cruel; it left a deep residue of sorrow, confusion and heartache for those who survived it. In the intervening years my daughters and I had re-formed our family and learned to live around the loss that punctured our lives. Yet we all carried memories of profound sadness. Initially, those memories controlled my thoughts about my choices. I did not want to inflict that kind of cruelty on any of those whom I loved.
I made my initial decision within my own mind right there, as I sat with my wife and the doctor. I would choose surgery. If I opted to remove the cancer outright, would I not also remove the possibility of causing my family undue pain and grief?
Yet there was something unsettling about such a quick decision. I knew that at best it was an ill informed decision, freighted with the emotion of past events and lacking in the kind of knowledge one needs when confronting a life altering event. I owed my new wife some input and discussion -- her life was also being altered -- and I felt that I also owed myself some additional research and reflection.
I kept my initial decision to myself. We thanked the doctor and I told him he would have my decision within a week. Then I went home and talked to my wife. Together, we began to study the options in earnest.
Throughout the next five days my prostate cancer dominated our lives. We laughed as we recalled that the last time we were this intense about a decision was several years before, when we discovered termites in our house. The analogies between that decision and this one carried a certain grim humor for us. After two frantic days of worrying about what could be done, we contacted a termite expert. He examined the house and assured us that the infestation was very minor.
We had the house chemically treated and then hired carpenters to rebuild the termite-damaged section. As the work progressed, we decided to replace all of the windows in the house and do some additional repairs. Ultimately, we contracted for a major home renovation. Hopefully our decision about my cancer would not entail the same kind of major rehab on my pelvic region.
During the following days I had a long talk with my family physician and I consulted with another urologist. I logged more than 24 hours on the Internet and found that the volume of information there was overwhelming. There were more than one hundred web sites devoted to prostate cancer, with more than five thousand articles, papers, chat rooms and discussion groups.
I selected three web sites maintained by reputable experts in the field of prostate cancer treatment and downloaded their content. A website at The University of Michigan Medical Center (www.cancer.med.umich.edu/prostcan/prostcan.html) gave me detailed information on surgery. The website of the Seattle Prostate Institute (www.seattleprostatemst.com) answered all of my questions about radiation therapies. The website of The Prostate Cancer Initiative (www.cancerresearch.org/prostatebook.html) contained valuable information about the nature of prostate cancer, its detection, and treatment options. I also spoke with eight men who had undergone various treatments for their own prostate cancers.
Finally, I spoke with one of the radiation oncologists that my urologist had recommended as a source for information about radiation treatments. The most striking thing about that conversation was the objectivity that the oncologist brought to our discussion. He did not attempt to "sell" me on his procedures. To the contrary the oncologist read the pathologist's report, spoke with my urologist and then explained all the options to me once again. He told me where to go on the Internet to gain additional information about each option, wished me good luck with my choices, and then told me where I could reach him -- night or day -- if I had more questions.
I went back to the Internet, gathered more information and then sat down with my wife to discuss it all once again. My wife's concerns mirrored mine.
Though we had known one another for most of our adult lives, Francesca and I had been married less than five years. We were still learning about each other and we were formulating plans for our life together. We were beyond our family-forming years and the major work of rearing children and freeing them to enter the world on their own was complete.
Francesca and I enjoyed a full life together; it was a life rich in the adult pleasures that middle age could bring. We contemplated a future that stretched perhaps two decades into blissful, comfortable old age. We are sensible about our diet, we exercise regularly and we are conscientious about health care. Our doctors had told us we were in good health -- except that now, one of us had cancer.
Like me, Francesca saw our time together as being compressed. The hopeful bubble of mild euphoria that enclosed our life had been burst by the reality of a few errant, evasive cells. Our plans had been moved forward perhaps a decade by a random event of illness. The options presented to us threatened to impinge deeply on the quality of our immediate and future life together.
We wondered what a diminished life would be like. Were there other things that could be substituted for the profound intimacy that was the best part of sex? What effect would lingering incontinence have on the volunteer work and the travel that was so much a part of our current and planned life? How would we achieve spontaneity and joy with the possibility of recurrent cancer shadowing us and our family?
I shared my fears about the past and its legacy with Francesca and she let me know that she understood those concerns. In the end she told me what I already knew: the final decision was mine. She also told me that, whatever I decided, she would back me completely and never second-guess my choice. I was not at all sure that I could match her selfless sense of commitment -- I had second-guessed myself all my life on simple things, and I was not confident that I could eliminate doubt from the difficult decision that lay ahead.
Francesca and I ended our discussion and I did what I often do when I have hard thinking to accomplish; I got in my car and went off to the woods to go fly fishing for trout. I caught a few fish on that trip, but the solitude of running water and the beauty of the woods also helped me to crystallize my objectives.
I decided that, if the past carried any lesson, it was that there are no guarantees in life. Each day is a gift to be savored to the fullest and used to the best ends. Nobody can know for certain how many of these gifts will be given. The decision was not about what we might have had, but what we would accept. I decided that I would accept the possibility of from five to ten more years in which my life with Francesca and my family could be as rich and fulfilling as the past five years had been. As I interpreted my research, only one procedure -- brachytherapy -- seemed to offer that possibility.
I had my radioactive seed implant on May 15, 2000. I entered the hospital, received an intake physical exam and was prepared for surgery. My urologist and radiation oncologist explained the procedure to me and answered my final questions.
As my physicians explained, 26 thin, hollow needles, guided by an ultrasound probe, would be inserted in the area between my rectum and scrotum. When the needles were properly positioned, near-microscopic pellets of radioactive palladium would be inserted through the needles and into the tissue of my prostate gland. After the pellets were in place, the needles would be withdrawn and I would be sent to a recovery room for several hours. The pellets would remain in place for the rest of my life.
Their radioactivity would kill the cancer cells and then decline altogether, leaving me, hopefully, cured of the cancer. My doctors assured me that the pellets would not cause me to set off airport metal detectors for the rest of my life. Certain minor precautions would have to be observed for six months, but none of my body's fluids or waste products would be radioactive. I could resume a normal life following the procedure as soon as I felt I was able -- usually within one to three days.
While brachytherapy can be performed with a spinal anesthetic, I chose a general anesthetic for the procedure -- my writer's curiosity goes only so far, and I had no desire to watch the proceedings. The anesthesiologist did her work and I awoke two hours later, groggy, uncomfortable, but ambulatory. I left the hospital that afternoon. Five days later, I was standing in a trout stream in Pennsylvania with my best friend, suffering through a torrential downpour. The fishing trip was rained out after three days, but during each of those days I walked several miles through rugged terrain and stood in swift water for hours casting my flies.
As promised, the side effects have been anything but pleasant. My groin was hideously bruised for two weeks following the procedure and I felt as though I was perched on an egg whenever I sat down. There are brief, fleeting pains that come and go at random -- little, daily reminders that the radioactive palladium pellets are buried in my body, doing their work. I have urge incontinence around the clock, which awakens me through the night and necessitates that I wear a diaper when I am away from home; my physicians tell me that this is temporary -- we'll see.
Thankfully, my sexual functions are as normal as they were before the implant; I'm told that this will be lasting -- we'll see.
So far, I have been able to stifle the urge to second-guess my decision, but that is not to say the urge has left me. I am doing my best to enjoy the gift of each day to the fullest, and to put the gift to its best use; the love of a good wife and a good family has made this the easiest of things to do.
I have no sense yet as to the efficacy of the brachytherapy, but my next PSA test is just a week away. Hopefully the test will yield a good result -- we'll see.
Any good dictionary will tell you that ambivalence is the coexistence of positive and negative feelings toward a person, object, or action. Life now is ambivalent -- it is a blend of things as they were just awhile ago and things as they are now. Yet in the long view, life is always ambivalent, and there is good comfort in knowing that. We cannot dodge all of the bullets. I have bitten my bullet -- for now, and hopefully for good. We'll see.
In mid-July 2000 Francesca and I left for a three-week trip to Italy. We had planned and saved for this vacation for more than a year; it was to be a celebration of my 60th birthday, and my daughters and their spouses were joining us in Tuscany, along with our two-year-old granddaughter.
When I first became aware of my cancer we discussed canceling the trip, but my doctors assured me that with brachytherapy, I would be able to resume normal life activities quickly and with a minimum of side effects.
We left for Italy nearly two months to the day following my seed implant procedure. My energy had returned almost to its pre-procedure level and while I occasionally felt the need to nap for a half hour or so at mid-day I was confident that I could make the trip. I like to travel light, and I packed my clothes for the three-week trip in a single carry-on bag. I also brought along another carry-on, a small blue duffel bag filled with diapers to help manage the urge incontinence that had dogged my every step since the implant procedure.
The brachytherapy left me with an irritated prostate and bladder. My urologist prescribed a drug called Flomax to ease the flow of urine. We experimented with another drug, Detrol, to help manage the incontinence, but getting the proper balance of the two drugs proved elusive. I was obviously going to be dependent on diapers for some time.
I had difficulty coping with the incontinence at first. All through life I took my bodily functions for granted. Then suddenly a normal function, which I had been able to control, became uncontrollable. I would feel an overwhelming urge to urinate and simultaneously would begin to void urine. The sensation struck more than 20 times each day and was especially strong at night, when I often awoke twice each hour with the urge to void urine. I had been warned to expect urge incontinence, and my doctors told me that the frequency and duration vary from patient to patient. Obviously, mine was an extreme case.
The feeling was different, too. As I passed urine I could feel it coursing through every inch of my plumbing. There was a burning and tingling that stopped me in my tracks, together with a slight pain of impending stoppage that felt like a soft punch to my abdomen. I worried about being caught short in public with a leaky diaper and trousers that carried the telltale stain of wetness. Francesca wryly suggested that I wear nothing but basic black to minimize any sign of leakage.
Wherever I went I carried spare diapers with me -- and let's face it, the things cannot be disguised. I took to toting a briefcase filled with diapers whenever I left the house, and the first order of business when arriving anywhere was to locate the nearest bathroom. I reflected on my good fortune that I work most days at home. I could not imagine what it would be like to cope with incontinence if I had to go to an office each day, ride public transportation, meet and greet people in business and social situations, or spend long hours away from home.
After two or three urinations the diapers became somewhat soaked and I had the sensation of sitting in wetness. I developed a nagging rash on my buttocks that talcum would not ameliorate. I began slathering myself with baby ointment to quell the rash. While this worked, it produced a sensation of greasiness that was exacerbated by the heat and perspiration of summer.
At first I was humiliated by my inability to control such a basic human function. I felt infantilized in a way and I told Francesca, ruefully, that my granddaughter and I would have more than genes in common during the trip; we would both be in diapers.
All of these considerations loomed large as I boarded the airplane in July. I learned quickly that managing the incontinence meant finding and adopting a new routine, and I was happy to find that this was easy to accomplish. It turned out that an old dog could be taught new tricks.
Within 24 hours I was walking through the ancient and beautiful hill towns of central Italy, enjoying my family and the food and cultural artifacts that are so much a part of travel. As a bonus, I had almost completely forgotten about my illness - prostate cancer was the farthest thing from my mind.
I learned to time my diaper changes to avoid being caught short and Francesca and I worked out a way to carry spares with us unobtrusively in a camera bag. I worried more about standing out as a tourist than I did about staining my trousers. I ran out of diapers, of course, which led to several hilarious situations in Italian drug stores. I worked out a series of gestures to indicate what I needed, and I invented a word, "incontinenza," to indicate my condition. The clerks were understanding and deeply sympathetic. The needed product was delivered double wrapped in plastic bags, so that the package label could not be read by passersby in the street.
The trip exceeded our best expectations. On my 60th birthday I sat with loved ones on the great square in the city of Siena enjoying a wonderful meal and a bottle of fine Italian wine. At the end of our dinner my family presented me with an unexpected yet perfect gift, a new fly fishing rod that I had wanted for years.
Everything that had happened to me during the past year - and everything that had transpired in our family as a result of it - came into sharp focus at that moment and took on heightened meaning for me. I knew then, in a way that I had not understood before, that when I beat this disease it will be in large measure because of the bonds that I share with my family. I reflected that if I lived to be more than 100 I could not duplicate the experience of sharing that evening, in that place, with my family.
When we returned from our trip the news was mixed. My first follow-up PSA test showed a PSA level of 0.6, far below my previous PSA of 4.3 and an indication that the radioactive seeds are killing my cancer. Both of my doctors, however, were concerned about the incontinence. Although I urinate frequently there was a question about the volume. Was I emptying my bladder completely, or was my body voiding just a bit of fluid each time to ease the strain on the bladder? If partial voiding was the case, then urine could be backing up into my kidneys, leaving toxins to circulate in my blood stream. If that were so, I would have to undergo another procedure that will allow my bladder to empty completely.
A blood test was ordered and I was scheduled for an ultrasound study of my bladder. In this procedure the volume of my empty bladder would be mapped by ultrasound and then I would drink a liquid to fill my bladder and force me to urinate. A second ultrasound study would determine if I had completely emptied my bladder.
I was on an emotional high following our trip, and the good news about my lowered PSA added to my feelings. The idea of more tests, and possibly more surgical or quasi-surgical procedures was unappealing at best. Happily, both tests showed encouraging results. There were no toxins in my blood, and the ultrasound showed that my bladder functions are normal. My doctors believe that my bladder is still highly irritated from the implant procedure. The irritation should lessen gradually over time and eventually disappear altogether. For now, though, it's diapers - a small price to pay for the overall peace of mind that I feel.
When I began this journey more than a year ago I recognized that I was entering unknown terrain. I told myself then that I must depend on my doctors for advice and guidance. I believe that I have been well served thus far; the procedure I chose is working and my doctors are monitoring every phase of my recovery. While I have learned much during the past year I still realize that I am on unfamiliar ground, and I am duty bound to follow the guidance of those who have gotten me this far. There will be more PSA tests and follow-up visits during the months ahead. We'll see.
My urologist ordered up another PSA test in early September 2000. The results showed a PSA of 0.9 - up a bit from 0.6 at my first follow-up, but still well within healthy parameters. I was more intrigued than frightened by this slight rise in PSA since both of my doctors had told me to expect some PSA instability at first. As they explained, the radioactive seeds bombard the prostate, stirring things up for many months. Since the prostate gland is unstable during this bombardment, PSA results will also show some instability. The good news, of course, is that the number is still much lower than before the implant, which indicates that the seeds are doing their work.
My radiation oncologist also explained another common side effect of the radiation seed implants. Many patients, he said, experience a PSA "bounce" in the latter months following the implant procedure. A year after the implant, he said, some patients may briefly record a PSA as high as 10 or 11. The high number may persist for a month or more, and then settle back into the healthy zone.
While there have been studies of the "bounce" phenomenon, nobody has offered a solid explanation of why it happens or what it means. The slight rise in my PSA is not in the "bounce" category.
Incontinence is still a problem that puzzles my doctors and wreaks havoc with my life. Diapers are still the order of the day whenever I leave the house, which is more frequently now as my work enters its busy season. Several days each week, I attend long meetings with my corporate clients as we plan strategy and discuss themes for their upcoming corporate annual reports. The majority of my clients are unaware of my condition, and I get more than a few odd looks as I excuse myself from meetings, pick up my briefcase and repair to the bathroom for a diaper change. I wear a suit and tie to most of these meetings, and that makes the clumsy affair of a change even clumsier. I am finding it difficult to hide my embarrassment in many of these situations, and my frustration grows in direct proportion to the amount of time I spend away from my home in dealings with my clients. My urologist has given me a new drug, Dytropan, to help moderate the incontinence, but after three weeks on the drug there is little change in my condition.
Most of the studies and reports I have read say that incontinence will disappear within six months to a year following the radioactive seed implant. The reports also say that most implant patients can expect a return to full pre-implant quality of life within a year.
Most of what I wanted from the implant has already occurred. My energy level is as good as it was before the implant and my sexual life is unimpaired. I have not experienced impotence, and there has been no change in either the frequency or quality of my erections. The sexual intimacy that Francesca and I treasure so much has not been affected by the implant.
Late in September I attended the first meeting of a prostate cancer support group. The invitation came from a urologist who had supplied a second opinion about my cancer. I am not by nature a joiner, yet I was drawn to the idea of a support group.
In the last year alone, some 180,000 new cases of prostate cancer were diagnosed, and about 37,000 men died from the disease. I am obviously a member of a large and not very exclusive club. So, I reasoned, why not attend a meeting and share my reactions and concerns with other members of the club.
The meeting was held at a large metropolitan hospital. It was cold and rainy on the appointed night, factors that might have influenced the light turn out and overall gloom manifested by those who attended.
There were about 50 of us and we took our seats in an auditorium that would hold about 250 people. True to the cross section of prostate cancer patients nationwide we were a varied mix - Black, White and Asian, old and young. The youngest member of the group was perhaps 45, the oldest perhaps 80.
We were a stolid, perhaps even sullen, group. There were only a few half-hearted attempts at introductions. We sprinkled ourselves throughout the auditorium, giving each other space and making no attempt to "buddy up" or exchange pleasantries. I reflected that we were like birds on a wire - sharing many things in common, yet maintaining a comfortable distance from each other. As we waited for the program to begin we buried our faces in newspapers, or perused the literature that had been handed to us as we entered.
There were several wives in attendance, and unlike their mates the women engaged in a friendly and open manner. Women, it seems, are better than men at sharing their feelings.
After a few minutes, a cheerful nurse entered and began to explain the origins and theory of the support group movement. We watched a videotape presentation in which fellow prostate cancer patients spoke frankly about their experiences with the disease and about the ways in which the support group had helped them cope.
The reaction in the room was one of general acknowledgement - some nodded their heads knowingly, others made small murmuring sounds of assent - as the videotape played out. Oddly, though, no dialogue was sparked by the presentation. When the lights came on following the video presentation, we sat and waited for the nurse to lead us into the next part of the program.
After a bit, the sponsoring doctor entered and welcomed us all. The group perked up a bit at the doctor's arrival. Clearly most of those in the group were patients of this man and they seemed to place a great deal of confidence in him. He encouraged us to start a dialogue - to begin sharing our experiences with each other. The dialogue quickly degenerated into a closed loop of individual question and answer sessions. Each man who rose to speak had a question for the doctor, and each question pertained to that man's specific case.
There was clearly a thirst for specific information, as man after man described some recent symptom and asked what it might mean, but I could not detect either the need or the desire to share personal thoughts or experiences with the group. It was evident that some curious male dynamic was at work; life had played a nasty trick on us and, while we wanted to know more about how that trick might eventually change our lives, we had no intention of discussing our feelings with each other.
Perhaps it was just the weather, or the awkwardness of the moment; or perhaps we were all still somewhat overwhelmed by what had happened to us.
I came away from the meeting wondering what I could take from future sessions of this group, but I also realized that I, too, had made no attempt to start a dialogue. Perhaps in a future session I will stand and start the discussion - do some sharing and caring without the mask of anonymity. Yet, I don't know if I'll be up to the task. Like every one of my brothers in that auditorium I'm still ambivalent about the trick life has played on me. The group is scheduled to meet again in mid-November. We'll see.
I attended another meeting of my prostate cancer support group early in January 2001. At this meeting five men who had undergone different therapeutic procedures shared their experiences with us.
The presentations, which provoked many questions from the rest of the group, were uniformly straightforward and candid. A good deal of practical, personal information was passed on and the men who spoke seemed to energize the group and free it from the insularity I had noted in earlier meetings.
There was a good deal of cross talk following each presentation. Several men made outrageous puns about lingering incontinence, and there was a general sense of brotherhood throughout the room. My impression was that everyone in the group had confronted the same demon, negotiated a truce with it and moved on with life. Everyone, that is, except for two men who recently had been diagnosed with prostate cancer but had not yet chosen their therapies. Needless to say, these two men followed the dialogue in the room with sharply focused attention.
We heard first from James and Joseph, both about 60 years old. who had been treated with a combination of hormone therapy and radiation.
James recorded a PSA of 20 and was diagnosed with prostate cancer after a needle biopsy. His tumor was assigned a Gleason score of 5. He received initial hormone therapy with two drugs, Lupron and Casidex, to halt the growth of the tumor and help shrink his enlarged prostate. Next, James underwent a course of external beam radiation followed by a radioactive seed implant. While he noticed some fatigue and loss of muscle mass during the hormone therapy, James tolerated the radiation and seed implant quite well, reporting only minor problems with incontinence, which quickly went away. Today, some six months after his treatment, James has a PSA of less than 2.0 and has returned to his normal routines.
Joseph was diagnosed with prostate cancer following a PSA test result of 7.9. His tumor was assigned a Gleason Score of 8.0 and he also chose a combined course of hormone therapy, external beam radiation and radioactive seed implant. Joseph experienced moderate fatigue during the hormone therapy and radiation treatment and has experienced frequent and uncomfortable nighttime urination in the seven months since his seed implant.
To alleviate his discomfort, Joseph's doctors prescribed two medications. As Joseph wryly noted, "the first pill made me urinate orange, the second one makes me urinate blue. I'm waiting for the day when I get back to plain old yellow."
Paul and Robert, both 59 years old, chose surgery - radical prostatectomy - to deal with their cancers. As both men put it: "I just wanted to get rid of it, once I knew I had it."
In 1995, Paul had a PSA of 4.3, but a biopsy was negative for cancer. He entered a period of watchful waiting, which culminated in 1999 when his PSA rose suddenly to 11. His tumor was assigned a Gleason score of 6.0 and he had surgery 90 days ago. He experienced some swelling of his scrotum and penis following surgery, but this disappeared after a week. He wore a catheter for several weeks, but resumed normal activity quickly following surgery. Paul enjoys exercise and he walks about four miles, five to six days each week. He resumed this regimen while wearing the catheter and found the device only "mildly annoying" during his walks. He took mild painkillers for a week (Tylenol) to deal with the discomfort of the catheter, but soon found ways to accommodate it. He has learned to manage the mild incontinence that still remains with him, but has otherwise resumed his normal life. His PSA is .04.
Robert discovered his cancer during a routine processing- out physical examination at the time of his retirement from the federal government. A PSA test administered during that examination showed Robert's PSA at 5.8. A subsequent biopsy and pathology report assigned a Gleason score of 7 to his tumor. Robert had his surgery in May 2000 and was discharged from the hospital six days later. He wore a catheter briefly and found it uncomfortable and sometimes painful - particularly when resting on his back as he slept. Robert found that his reclining chair helped alleviate the pain and discomfort of the catheter and he found that by using the chair in place of his bed, he could get a good night's sleep, free of pain. Interestingly, pathology studies of his tumor following surgery caused his doctors to downgrade the Gleason score of his cancer from 7 to 5. Today, Robert's PSA is .03. He still struggles to manage his lingering incontinence but said that he is doing much better now than during the months immediately following his surgery.
The last speaker of the evening presented the most moving story. William was diagnosed with prostate cancer in the spring of 2000, when he was 44 years old. His PSA at that time was 7.3 and his tumor was given a Gleason score of 7. He underwent surgery in early October 2000, and was released from the hospital two days later. A few days later, pathology studies of William's prostate tissue indicated that the tumor was actually a Gleason score 8, which was a sign that the tumor had penetrated the prostate capsule and had the potential to spread to other parts of his body.
William was given hormone therapy to slow the growth of the cancer and recently he began a course of external beam radiation therapy. William said that his energy level is fine and that he does not feel fatigued from his therapy. He is looking forward to resuming his normal activities as soon as he completes his radiation treatments. His final warning to us drove home a point that is often overlooked. "Just because you're not 50 years old yet, don't think that you can't get this disease; it can hit anyone, at any time."
As I listened to these men talk I reflected on my own actions and reactions during my confrontation with prostate cancer. At the very beginning, when my family physician first urged me to consult an urologist, a wave of panic had washed over me. As I stood in his office my doctor gave me his personal telephone directory and pointed out three urologists in whom he had confidence. "Call these three right now," he said, "and see if one of them will give you an appointment this afternoon."
I chose the first urologist who had space on his schedule that day. As I drove to the urologist's office I reflected that I had taken less time to choose a doctor than most Sunday golfers take to line up a ten foot putt - not the best way to make what might be a life altering decision.
Sitting with my support group a few nights ago, I realized that I had been extraordinarily lucky in my hasty decision. The urologist I chose is knowledgeable, patient, experienced and empathetic. He became my ally during our first meeting and he has remained a strong ally throughout my time with him. He is tenacious, too, and this quality has served me well.
During the last seven months I have been reluctant to confront my incontinence head on. I have been content to accept it as a side effect of my treatment that will eventually go away. In each of our meetings my urologist has told me that the kind of incontinence I am experiencing in not a typical side effect of the radioactive seed implant procedure. He tells me that by now, I should have seen some improvement, and that he believes the incontinence has another cause. I listen to these talks, and then I try to bury my head in the sand. Each time, my ally pulls me back to reality.
I have finally decided to follow my urologist's advice. In a few days I will have my second cystoscopic examination. My urologist believes that one of the radioactive seeds may have migrated out of my prostate and is pressing against or has penetrated the wall of my urinary duct. If this has happened, the seed would irritate the duct and cause the incontinence I am experiencing. A second possibility is that there is a small amount of scar tissue within my ductwork or in my urinary bladder - either of these could also cause the kind of incontinence I am experiencing.
I do not look forward to the cystoscopy. The thought of the optical fiber snaking its way through my plumbing once again is decidedly unappealing. I feel that I have been poked and prodded and skewered enough during the past seven months. I'd like to take a breather, but I would also like to urinate like a normal man once again, and I realize that my urologist offers the best opportunity to realize that goal. We'll see. I will keep you posted.