Here is My Story...
I Will Read Your Words Too
By Gary Elgort

      I?m forty-two years old and earlier this year, at forty-one, I was diagnosed with prostate cancer (PCa). I?m married with children—three stepdaughters and one little girl of my own. I'm writing this on November 23, 1998, the two-month anniversary of my radical prostatectomy. It feels like a lifetime ago. Here is my story.
      In January 1998 at a routine physical I got the first hint of a problem. At that time it seemed like nothing. The doctor performed a digital rectal examination (DRE) and told me he ?thought he felt something.? He wasn?t certain, just a possible slight non-uniformity.
      Ordering a PSA (prostate specific antigen test) on the blood I?d already given, he suggested that I might follow up with a specialist. My PSA came back at 0.7. Telling myself that 0 - 4 is considered normal, I did nothing.

Disbelief
      In March, Executive Health in Manhattan (where I?d gone for the physical) called to ask if I?d followed up. I told them (white lie) I?d yet to get an appointment but I would. I hung up convinced I was fine (0.7 PSA) and they were just doing their job.
      Amazingly, they called again in April. This time (bigger lie) I told them I had tried but was having trouble getting an appointment that fit in with my work schedule. However, when I hung up I realized they were going to torture me until I told them I had gone to a specialist. Since I didn?t really want to totally outright lie, I made an appointment. My regular doctor gave me the name of a urologist on my insurance plan, and I set up an appointment for a Monday night after work.

First Visit to Uro
      I arrived at an office waiting room crowded with pregnant young women and several (to me) much older men (around Dad?s age). The doctor, a tall, mid-forties Indian gentleman, talked with me a short while, looked over my medical history, and gave me a DRE.
      I liked this man immediately. He had a good sense of humor and a no-nonsense manner. He appeared very intelligent and extremely well informed. He told me that while he definitely did feel something, it was extremely subtle. I should congratulate the doctor who had found it since, in his opinion, most GP?s or internists would have missed it. He told me that with the small size, the low PSA, and at my age odds were very high that this was nothing. He said I should come back every three months and he would monitor the physical characteristics of the lump and my PSA level. If nothing changed after a year we would spread out the time of my visits.
      I asked what would be done if there was a change? Then we would consider a biopsy, he said. I asked why he wasn?t recommending a biopsy immediately and he told me again about the odds, adding that a biopsy wasn?t without pain and discomfort. He added that a lump this small could be missed. Or if we got it (sampled the lump) and it came up clear, still it would be best to continue to monitor for future changes.
      I gave all this serious thought, and responded that in my professional life I perform life assessment examinations for high temperature, high pressure piping systems. When I find an indication of a problem I investigate it deeply and then decide to monitor or repair as required. Based on all this, we set a date for the biopsy on the next Tuesday.

Biopsy Day
      When Tuesday morning arrived, I prepared myself for the biopsy by taking the home enema (a new experience in itself), then headed out to the doctor?s office. My wife drove me, we arrived about fifteen minutes early, I signed in at the desk. Funny how you remember every detail. I noticed that most of the people already signed in were there to see my doctor too. The nurses asked who I was and what I was doing there. Didn't the expect me? It seems, that when I had seen the doctor on Monday, we had finished talking things over quite late. All the office staff had already left, and so, while my appointment had been made, it never got recorded. Now they were overbooked.
      I was led into the biopsy room and given a gown to change into. Because of the scheduling mix up, I had to wait about half an hour in the biopsy room before the doctor arrived. A half-hour in which I got a real good look at the ultrasound probe and the long needle for the biopsy.
      Well, by the time the biopsy began I was just the littlest bit nervous! That two-foot-long needle really had me going. I was also quite fascinated by the equipment since I work in the field of non-destructive testing.
      The biopsy itself was rather uneventful. I was able to get rather comfortable on the table and relax (a big help). After the third sample was taken I began to anticipate the snap of the needle gun and could feel some increasingly painful twinges, but it was over soon enough. After cleaning up (there was more blood than I had expected) the doctor told me to come see him on Thursday for the results. I told him I?d call him, since it was difficult to get to his office on the island given my working hours in the city.
      The day wound up with a rather uncomfortable train ride to the city and a somewhat tender but not unbearable day at work. I had no blood in my urine following the biopsy and minimal blood in the stool for less than one day. My ejaculate, however (few days later - I?m not crazy) was a disturbing reddish brown. If only I had known this was to be just about the last time I would ever have any!

Diagnosis and Initial Staging
      On the Thursday, two days after the biopsy, I called twice during the day but the doctor was busy with patients. We finally got together on the phone after I arrived home. I had called his office, and when he got on the phone he said the words that I shall never forget, ?I didn?t want to tell you this, but you have CANCER." I was on the staircase at the time, and suddenly felt as though I had no knees. I sank to a step stunned and silent.
      He asked if I had any questions. ?I guess about a million,? I said — yet couldn?t think of any. Then I asked, ?Am I dead?? (Oh, how little we know and how scary that word is). Don't panic, he said, and began to explain.
      I had a Gleason 6 aneuploid T1b tumor in 25% of only one of the six sections. Even if I did nothing, he said, I had a minimum of 5 to 7 years. Although the terminology meant nothing to me at that time, it was a comfort. My first reaction had been to think in terms of months. He asked me to come in to see him to discuss the various options open to me.

Starting to Make a Choice
      Dear God, how to tell the wife, the kids, my parents, sisters, brother, work? That evening when my wife came home, we talked and decided to keep the news to ourselves until we knew more. We hugged and she cried and we went to sleep with our fears. Several days later—which seemed like years— we had our visit with the doctor.
      On the advice of a therapist and close friend, we came armed with a written list of questions. I strongly recommend this to anyone in these circumstances. We asked many of the usual questions, went through the possible treatments, and focused (based mostly on my age) on radical prostatectomy (RP). It turned out that the doctor was a specialist in uro-oncology, who had lectured by invitation worldwide (Spain, Taiwan, and Australia) on the topic of radical prostatectomy in conjunction with hormone therapy. He had performed more than 650 RP?s.
      The doctor discussed his preferred treatment plan of preceding the surgery with several months of hormone blocking therapy. I was in process of transferring within my company; so the option of controlling the timing of the surgery was very appealing. We also had already paid-up plans for a family vacation in the summer. The doctor said that he was strongly convinced that surgery done after CHT had less blood loss, greater ease of bladder reconnection, and more rapid return to continence (a bunch of things I had never in my life thought of, but sounded good). My choice was made.
      I took the first Lupron shot that night and began the thrice-daily ritual of flutamide pills. He warned me about hot flashes and said we?d have to check my liver function. Desire and erection, he told me, soon would vanish. Yeah, right I thought, I?m about the horniest guy I ever met. He also stated that the therapy would knock down my PSA and make the tumor shrink significantly.
      We left the office numb. The doctor had spent over an hour-and-a-half with us, answering our every question with compassion and a great depth of knowledge.
Friends in the medical field had supplied me with several journal articles on prostate cancer and its diagnosis and treatment. I had done some homework. My confidence in the man had again increased.

Further Diagnostic Testing
      Next came a check for metastatic disease. Within a couple of days I was in the radiologist?s office for a bone scan to see if the cancer had spread. Things had still not really penetrated my head yet. The technologist was a pleasant, humorous man of about my own age. He gave me the injection of radioactive dye and told me to return in about three hours. Then he asked jokingly, ?What am I torturing you for?? I told him ?A bone scan.? ?I know that," he said, "but why?? I told him I had been diagnosed with prostate cancer. His entire demeanor changed, suddenly he was deathly serious as he asked, ?At forty-one?? I could barely answer ... yes.
      The doctor called me with the result —the bone scan was negative, we had clear sailing to follow the course of CHT and then move on to RP surgery. Next day I phoned Executive Health and spoke to the doctor who had examined me in the first place. With tears in my eyes and a lump in my throat, I thanked him for saving my life. He was very touched and thanked me, noting that very few people ever give feedback to the diagnosing doctor.

Sharing and Withholding News
      That weekend we celebrated my mother?s birthday. We still had not told any of the family; we wanted this happy time to be unmarred. At the party the topic of Frank Zappa came up. I had always been compared to Frank because of my facial features, long hair, and style of beard. I asked how he had died, and was answered ?From prostate cancer?. WOW. That almost did me in. Amazing what you hear when your mind is sensitized.
      A few days later, my wife and I decided it was time to tell the family and friends. Talk about difficult. We weren?t exactly a group that discussed things like this. As an example, when my uncle had a triple bypass recently, it took a week for me to hear about it. Telling the kids was brutal. Just the mention of the word cancer drives everyone's thoughts toward death. Seeing the fear in their faces (and afraid that, no matter how much I tried to tell them differently, their fear would remain) has been the most horrible event in my life.
      All in all, though, the children took this news much better than I could have expected. I finished up feeling loved and supported. Telling my parents wasn?t too much easier. My mom was at a loss and my dad decided that maybe it wasn?t real, maybe it would fix itself - would just plain go away. (My dad is terrified of doctors and hospitals.) Everyone had their own responses based on who they were, regardless of my prior relationship to them. It was impossible (at least, for me) to tell who would be right in there with me and who would be running for the hills saying Well, they found it early and after the surgery you?ll be just fine. Even my therapy group didn?t know how to deal with the concept (me!) and ducked for cover.

Heat and Anxieties
      Some weeks later I began to have my first hot flashes. Now your first hot flashes are an interesting event; something unusual and never expected to be experienced by a man. After all, how often do you find yourself in a freezing cold air-conditioned train car sweating like a dog ? As time goes on they get pretty damn annoying. My sympathies go out to you ladies (and to you men in our PCa club).
      Along with hot flashes began (as predicted) the loss of both my desire and my erection. OOF! This was starting to be too REAL.
      Amazing what you hear (as I said before) when your mind is sensitized to a topic. Believe me, mine was. One day I was talking to a co-worker about IRA?s. How much you needed to save, I pointed out, was proportionate to how long you expected to be retired. His family, he said, lived into their late eighties and nineties— all except his uncle Joe. Uncle Joe had died at fifty-three. Uncle Joe had gotten that cancer that men get. And then he added, ?I told my wife, if I ever get that, shoot me.? When I could speak, I said ?I guess this isn?t a good time to tell you— I have that.? I was to hear that ?shoot me? refrain many, many times in my mind over the next months.
      While coaching my nine-year-old daughter?s softball team, another coach and I observed some young guys having a spirited football game. The other coach remarked ?Man, there?s a lot of testosterone flowing over there.? I could only think, ?Yeah, and none here."
      I also began to pick up anxieties from things I heard casually, at work, or from the family, about other people's surgeries. My own medical history includes sensitivity to things like Percodan. I worried about the epidural, which my doctor remommended as the best method for pain management. I myself wanted to have it, it meant less general anesthesia was needed.
      At one point I noticed I was having an odd reaction on hearing of others far worse off than me. I was relieved! I heard of a man with pancreatic cancer given three months to live— and he didn't survive even two. In my state of mind at that time, this hit me both ways. I felt pain for this unknown man, a pain I had never felt before; yet at the same time, I was glad— I "only" had prostate cancer, I would not die in two months flat.

Second Opinion. I Stand by My Choice
      About a month after my first Lupron shot, we decided a second opinion was in order. One of my neighbors is a urologist with a practice at Good Samaritan Hospital on Long Island; although we ended up talking things over with him, I hesitated to have a doctor-patient relationship with someone that close to home. Then like a lightning bolt we realized (with a nudge from a co-worker) that here, almost in our backyard, was a place that people came to from all over the world. So, off we went to Memorial Sloan-Kettering Cancer Center.
      Before going we checked-in with my doctor and got all my test results, etc. He told us that we could and should go anywhere we wanted but that here?s what would happen. The facility and the people would impress us. We would first be seen by an intern who would administer the exam and only then see the surgeon for a short consult. He also said that we would never know for sure who assisted (maybe even actually did) the surgery, and that most likely during follow-up a different doctor would see us each time. I am happy that I chose to consult MSKCC for this second opinion. Getting it gave me peace of mind. Yet as far as the initial visit was concerned, my urologist's prediction came true.
      The blood work and digital rectal exam at MSKCC bore out what my urologist had predicted about hormonal therapy lowering my PSA and shrinking the tumor. (Actually, the urologist I saw at Sloan-Kettering would not have given me CHT. In his opinion it could mask signs of spread until after surgery and could make the nerve-sparing more difficult.) A young intern saw me for the initial exam and couldn?t find any lump. Then the surgeon performed a DRE and also could not feel a lump or non-uniformity. They did agree that RP was the best course of treatment; and they confirmed the Gleason score of 6. We found the fifty mile trip to Manhattan quite draining. The thought of repeating it many times in the next few months, daily for surgery, then for follow-up, for us was another deterrent. (I guess it sounds kind of trivial but it didn?t seem so to us.)
      Later that same day I visited my doctor for the first follow-up visit and Lupron booster. He also could no longer feel the lump. We discussed the use of hormones and Sloan?s opinion on the nerve sparing. He said that his experience was otherwise. We again talked for over an hour, and sometime during this visit I made the decision to commit to this man and his recommendations for treatment. A day later he called with my PSA, it was down to 0.1. We were on our way.
      Please note that I continue to say, ?he called?. This is a literal statement. My doctor personally called every time I had a test result.

Dateline
      After my third Lupron shot, the doctor said things were going well. We were ready to schedule surgery. A tentative date was set for two months ahead, September 16th. My workplace was terrific. My boss and co-workers were completely supportive. My boss gave me the time I needed for tests and doctor visits. He arranged for a co-worker to cover for me from the time of my vacation in late August, through my surgery in late September, all the way through my recovery period at home, and even until year's end for an extended at-work recovery period. I couldn?t have asked for more, and actually couldn?t even imagine this much. The company VP called me into his office and we talked. He himself had had a PCa scare that year but was fortunately diagnosed with BPH and was doing well. He was very supportive.
      Meanwhile, we took our trip to Disney World. The trip was a success, though I noticed quite a bit of strain between my wife and her mother. I don?t know - looking back, I guess my cancer may have contributed. One night (after about two months of CHT impotence) my wife and I made love. It was wonderful and terribly sad all at the same time. I couldn?t help wondering if this was to be the last time.
      In August, after our vacation, we found that my surgery date conflicted with our third daughter?s Parents' Day at college. This was her first year and she was having a rough time of it. We were able, safely, to take advantage of the CHT to allow our life to dictate the timing of the surgery, not the other way around.

Surgery
      My doctor suggested that I make two units of packed red blood cells available for surgery. Since I am anemic (Thalassemia minor - Mediterranean anemia) and have Gilbert?s Syndrome (elevated bilirubin - jaundice) this turned out to be more difficult than anticipated. I finally had to give only one unit and get one from my wife (only mine was returned during the surgery).
      During these intervening months my youngest daughter (nine-years-old) continued to be haunted by thoughts that her daddy would die. It tore me up inside.
      My last Lupron shot was administered two weeks before surgery. Also at that time I stopped the flutamide pills. My PSA was again 0.1 and all was ready to go. A week later I was in the hospital having the pre-surgical testing. Fortunately no new conditions were discovered and my hemoglobin and hematacrit had recovered to acceptable levels. I was pronounced ready for surgery.
      Finally the day of surgery arrived. I know I slept that night, I just don?t know how much. I filled out all the paperwork. I showed my wrist band, which had been attached at the pre-surgical testing (after all, went through my mind, you wouldn?t want someone slipping in for a free operation— but who in their right mind would want this if they didn?t have to have it?). I was placed on a gurney. Now was the time for the pre-surgical shave, the thing of so many Playboy Letters fantasies. Only two problems: firstly, I was on CHT and couldn?t react if I wanted to; secondly, the beautiful blonde nurse was a guy. OH, WELL!
      Hooked to the first of two IV?s, I was wheeled into the operating room. Wow, it was cold! They kept bringing me warm blankets and I just kept shivering. The doctor came in wearing his Yankees T-shirt to let me know he was here and would be with me shortly. I met the anesthesiologist, who discussed the plan for the epidural. As he was filling out paperwork he suddenly asked, ?Do you have a sister named Janice?? It turned out they are good friends. I know this is weird - but I thought ?Good, now this guy has an added reason to keep me alive?. And I was comforted.
      After being given the epidural (only slight discomfort, although a very weird sensation) the anesthesiologist hooked me up to the IV, gave a small "push," and told me to relax. Moments later the world was fading away.

Post-Op
      My wife had questioned the doctor repeatedly about the availability of pain medication immediately following surgery. I had told people that I would welcome the pain after surgery as a sign that I was still alive. Well, when I woke up my doctor was standing right in front of me telling me that everything went fine. Then it struck me; I had NO pain! The epidural was wonderful. I was pain free for the first full day following surgery. I strongly recommend it. However, beware, the pain that comes later (contrasted with that first day) was all the more depressing.
      My wife told me later that when the doctor came out to give them the news of my surgery, the first thing he told her was that I was resting comfortably and was in no pain. What a wonderful man to remember her concerns. After I had been moved to intensive care weak as a kitten, and nurse-handled into bed, the doctor returned. He told us that the bilateral hip lymph node pathology was clean and there were no signs of spread or capsular penetration. He had been able to spare the left nerve bundle (the right was too close to the tumor). Reconnection to the bladder neck had gone extremely well. Surgery time was 2 hours and 5 minutes. Not a record, but quick. Blood loss was 500cc with my autologous donation returned. We were thrilled.
      When I felt brave enough to look under the sheet I saw only a large, well-taped bandage with a tube for the inside body drain (JP) sticking out of my side. Looking further I saw my bruised and swollen penis with the catheter. The catheter tube was as big around as a Bic pen and encrusted with Betadyne and dried blood. I just stared, thinking THREE WEEKS! Everyone kept asking if I was in pain and I kept answering, ?No.? And I wasn?t — not yet. But with the aid of some post-anesthesia nausea and vomiting I succumbed to the pain, and got my first shot of Demerol. It worked, at least for me. Moments after the shot I was practically unable to move. I had a cup of water in my hand, and try as I might I couldn?t put it on the side table. Finally my wife had to take it from me.
      My first attempt at a bowel movement was a shock. I guess because the urethra has been cut, internal pressure can force fluid down the urethra on the outside of the catheter. Whatever it is, it sure was uncomfortable. Each bowel movement for the first two weeks was an agony - both physically, but even more so, mentally. Everyone knew when I was going by the howls emitting from the bathroom. This elicited the most tears and helpless/hopeless feelings I have ever had.
      From the start I had visitors— my wife, my daughter Erika, my parents, my sister and her husband, my brother, and my best friend. After a shot of Demerol I would barely be able to respond to their encouragement. But I knew they were there and was buoyed by their presence.
      All through this, my wife was a rock! She took time off to help me, feed me, and, most importantly, just to be there. My parents came daily to assist and keep up my spirits. Friends from my therapy group really came through, visiting, calling, and sending cards and even a big care package of goodies. One of my co-workers, a wonderful man and terrific friend, called me every day or two for the entire six weeks. Whether we talked about how I was doing or the latest in the office, he was a tie-line to my life outside of PCa.

Home
      On first returning home, I walked like a ninety-year-old. As time progressed, I regressed: soon I was down to eighty-five, then seventy-two ... till at last I was back to my self. It took one hell of a lot longer for me to achieve this recovery than for you to read, that?s for sure.
      The support and caring pouring in from relatives, friends, and especially co-workers was astounding. The number of cards, a thrilling surprise. I truly had no idea so many people cared about me! I can never adequately thank them. But I will try to be there for others in their need. Only now do I know how truly valuable such support is, how devastating its absence can be. The crying jags were brutal. They seem to be a mix, some caused by pure emotion, some by the CHT. All sorts of things would set me off. A movie I?d seen before, not having a battery in my beeper (what the hell was I going to do with it anyway?), the thought that I would never have another child (although with four we were quite finished already), any damn thing could do it.
      Then at a certain point my workplace medical department decided that I should travel into New York City for a review. My boss called in alarm, saying I was expected in at 8 am. They didn?t seem to be aware of my reality. When I called them and asked if they really expected me to take the five-hour round trip while still catheterized, an appointment was set up for three weeks later. Little goof-ups like this really throw you.
      Finally, two-and-a -half weeks after surgery, catheter removal arrived. An anticlimax. Minimal discomfort .... but O, the freedom. I could finally roll over in my sleep, walk unfettered down the block. Hooray. And thanks to my surgeon's skill and experience, I have been continent since day one. What a huge weight lifted from my mind. I had heard from others who had suffered with incontinence for months. I did, and still do, have intermittent drips during coughing, yawning, or for-just-no-apparent-reason several times a day. A small panty liner takes care of the problem, although each time it happens my mind still twinges.
      The next three weeks I spent regaining strength, stamina and flexibility. My neighbor the uro, after hearing about my recovery to date, said that I appeared to be ?way ahead of the curve?. He attributed this to my age. I?m sure that?s a factor, but I give top billing to my doctor?s skill and experience.

Returning to Work
      Five-and-a-half weeks out, I returned to work. Short days with restrictions for the first month. It shocked me how draining even a short day could be. I would arrive home wiped out. People at work were very supportive; long emotional conversations ensued. I?ve never been bought so many lunches. To say it again, I am amazed at how caring people have been.
      Some weeks after returning to work, I was again contacted by Executive Health. They wanted to know how I was. After I told them, they asked me if I would be interested in being part of a radio ad campaign to encourage health exams. I think that I will do this. I want to give back so that others can catch this and other devils while they can still be exorcised. If I hadn?t done so, I couldn't be confident of making my 50th birthday.
      So here I am (November 23, 1998) on the two-month anniversary of my surgery. I still have minor drips of urine; and although my muscles give me no pain, the skin in the area of the scar remains sensitive to the motion of my clothing. I?m still easily fatigued, I still have hot flashes and as yet I have no emotional or physical indications of desire. It is very much as though my best friend and constant companion has died. It?s driving me crazy. But support from a prostate cancer E-mail group I joined (the Circle) has greatly eased my mind. I await whatever the future holds with the comfort of knowing there are warm caring people I can share it with.
      This Thanksgiving, I know I have much to be thankful for. Early, in the morning quiet, I was fooling around, and although I did not get an erection, I did achieve an orgasm (although it seems somehow incomplete without any ejaculate). Even though I still have a long way to go in that arena, I guess that?s half way there.
      Perhaps the hot flashes will disappear soon. I just returned from the six-weeks-after-catheter-removal visit. The doctor says I?m doing fine. He says erections and desire will have to wait for the Lupron to fully wear off. Maybe up to four more weeks. He says it?s too soon to contemplate intercourse (oops). He reminded me of the severity of the surgery and the need for a proper healing and recovery period. I read the transcribed synopsis of my surgery. Man is it complex! I continue to struggle with the mental— or rather the emotional —aspects of just what has happened to me.
      It blows me away that my entire life has been turned upside down/inside out and I didn?t even have any pain or other problems to presage the event. When my wife had her gall bladder out, the disabling pain made it clear to her that she needed surgery. What did I have? A lousy picture of some distorted cells in a small percentage of one of six samples from deep inside my body. At the same time, I know (somewhere in my head) that the ?lousy picture? and the diligence of the doctors who examined me are responsible for saving my life.
      I remain worried —intermittently terrified—about what the future has in store for me. In my E-mail group I witness trials that many other patients endure. Will I? Could I? Time will tell. How to live well in the interim - with this invisible Sword of Damocles poised above me? That is the difficult challenge currently facing me. I ramble .... For those of you who have read my story to the end, thanks. I will read all of your words too.

Gary E. Elgort, Professional Engineer/ Metallurgist, works at Consolidated Edison's Steam Operations Dept. in NYC, NY. He lives on beautiful Fresh Pond in scenic Fort Salonga, Long Island. Contact him by e-mail at [email protected]