Personal Experiences of a Prostate Cancer Survivor

Ron Kauffman
Last Modified: March 8, 2002

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I'll try to be descriptive, yet brief.

I am a 51 year old man, who since I was 48, had been getting PSA readings in excess of 4.0 during my annual physical exams.

At first, little was thought about these 4.2, 4.3 readings, but when they started to edge up even more, my family physician suggested I see a urologist.

I went to a urologist, and as "luck" would have it, I draw a female physician. What can I possibly discuss with her that she can relate to regarding my symptoms and concerns.

Her name is Dr. Elaine Rosner* and she practices in Boulder, Colorado. Elaine was all business. She asked me about symptoms other than the high PSA. I told her that I had begun to experience a decrease in the "power" of my ejaculations during sex with my wife. Elaine said she understood my concern, but I honestly didn't know how any woman could know what I felt, or how concerned I was becoming over both my physical problem and the rising PSA scores. I was certainly becoming comfortable with Dr. Rosner, and even though I doubt she could understand precisely my diminishing sexual performance, we settled into a good working first name relationship, which in itself bears some explanation.

When we first me, during my initial urology appointment, Dr. Rosner had walked into the exam room, introduced herself as "Dr. Rosner" and basically told me to..."drop 'em." She went on to explain as she gloved up, what she was doing, and that it was nothing to be concerned about, which I thought was easy for her to say, since I was the man being prodded. It was as that moment, as she completed the digital exam, that I recall saying to her, since she and I were about to become "intimate" friends, I would call her Elaine, and she could call me Ron, since she was insistent upon scheduling further check-ups.

Elaine's first course of treatment for me, since she found nothing terribly unusual during her first digital exam of me, was to try Cipro, 500 mg twice a day for about 2 weeks, just to eliminate any prostatitis or low grade infections. After all, I was too young and too strong to suggest any other possibilities.

After the Cipro treatment, my blood was retested, and my PSA score continued to climb, over 5.0 now. So, Dr. Rosner suggested a biopsy. Frankly, having never experienced a biopsy, I wasn't too frightened, and I figured it might clear up the rising PSA question.

I recall, as I lay on the exam table, "this must be what it feels like to be a woman, with a male OB-Gyn poking and prodding around my insides, and telling me that, "...this will feel cold...now you'll feel some pressure...okay, now you can watch the monitor over there and we'll get some pictures of this as part of the procedure."

Even though I was told by Elaine's female nurse assistant that the biopsy would feel like a snap of a rubber band inside me, I wasn't prepared for the first "hit". I felt as if I had just been lightly kicked in the groin, nothing severe, but a slight wave of nausea...This is where I decided that watching the monitor was not for me. I clearly remember counting the "snaps" of the biopsy, as a total of 6 tissue samples were removed within a few minutes that felt like hours. I got up, left the office, and drove home to wait the 4 days for the results.

Although it was over 2 years ago, I vividly remember making the call to check on my results. I had told my wife, "...no sweat, everything will be fine", and for my friends, I "acted" as calm as usual. Inside, I had spent a very long 4 days wondering if I had cancer. When at last I made the call to Dr. Rosner's office, one of her staff simply stated, once I had identified myself, that the results were negative, and said goodbye.

I'm sure I said thanks, but the tears of relief that filled my eyes as I sat in my office at work made it hard to say anything but a silent, "Thank God". I didn't have cancer. I was healthy. So I forgot about cancer for at least 6 months, until my next PSA test was scheduled, and moved on with life.

The results of my first biopsy were negative, but subsequent PSA blood tests continued to reflect increasingly higher readings. Something was definitely screwed up. The results during sex, although not impacting performance, were still not what I expected, nor were the PSA scores of 5.4. So, Dr. Rosner suggested we wait, and check PSA again every 3 months, which we did, showing continuingly increased PSA test scores, reaching as high as 6.4.

Elaine once again suggested that I undergo a second biopsy. This time I knew what to expect, and was less than excited. But I was also concerned that something was not right, and it was happening inside of my body. So, I agreed to the test. It was even more uncomfortable and anxiety-causing because I knew what to expect. And counting up to the 6 tissue samples seemed more excruciating than before, but it was over in minutes, and again, I drove home with hopes of a positive outcome.

Several days later, I again received the results which continued to show no cancer. At this point, Dr. Rosner and I agreed that I had a high baseline PSA, but would continue to monitor things about every 3-6 month with PSA testing. After all, how many biopsies can one do with no results?

During the next several months, because of my EMT training and interest in medical procedures, Dr. Rosner invited me to attend a Radical Prostatectomy procedure on one of her patients who had agreed to allow me into the operating theater to watch. It was incredible. I was reminded of the joke that if you really like eating in a particular restaurant, you should never ask to see the kitchen.

The operation looks and is radical. It took just over 3 hours, and I watched from just a few feet away as the bladder, ureter, urethra, and prostate were all cut, disconnected, and then reconnected and replaced. All but the deadly cancerous prostate. I recall saying to Dr. Rosner that it was fascinating, but given a choice, I would never ever want to have that procedure done to me. It just looked like it hurt. And to be catheterized for weeks afterward, no thank you.

And so the weeks and months went by, and an opportunity to relocate to another state presented itself to me and my wife, and by the end of summer, 1995, we became residents of Jupiter, Florida, bidding farewell to Dr. Rosner, prostate biopsies, and our friends in the Boulder area.

On my 51st birthday, November 1995, I scheduled my annual physical exam, including a PSA test. Everything came back perfect - except my PSA. 7.2!! I couldn't believe it. I was immediately sent for a retest, and the retest came back at 6.4. Better, but not good.

My HMO physician sent me off to my newest urologist, Dr. Henry Baldwin*. Surprise! He wanted to do a biopsy. By this time, I felt as if I could do the damn things myself. We scheduled the test, not as uncomfortable or disconcerting as the first two, but never-the-less, not fun. Because of my HMO, I had to wait 2 weeks for the tissue sample results. That can be an eternity to a potential cancer victim.

I returned 2 weeks later to Dr. Baldwin's office. The doctor asked me how I felt after the biopsy, and if I was doing okay. I was actually lulled into a sense of security by the small talk, figuring he would be somber and all business if the results were bad. But here we were talking and chatting, and I began to feel buoyed in spirit.

That's when Dr. Baldwin said, "The results came in, and you have a Gleason score of 6; you have prostate cancer." I felt like I had just been punched in the stomach. I sat there, and the first words I said to Dr. Baldwin were, "That sucks, that really sucks." He said, "Yeah, it does." Then I said, "Are you certain? I want a second opinion." This was on February 15, 1996.

I paid for a second opinion, and got the same answer. I had prostate cancer. I remember saying to Dr. Baldwin that I couldn't take time off from my business, I'm a consultant, and if I don't work, bills don't get paid. I also remember what he said to me, " I really don't give a damn if your bills get paid. I'm your doctor, you have cancer, and I care about making you well. What good will your money be if you're dead?" Now that got my attention.

We discussed options, radiation, surgery, implants, cryo-therapy and combinations of treatments. But Dr. Baldwin would not be swayed. He said surgery, and I said, I need time to do my own research. And I did. For 2 weeks, I called the American Cancer Society, my former family doctor, Dr. Rosner, specialists, cruised the Internet, and kept coming up with the same consistent answer - surgery. But, I wasn't convinced, yet.

During this time, I received a phone call from a friend of my sister's ex-husband, a man I didn't even know, and to this day have never met. But he had just undergone the surgery for prostate cancer, and because of his research and experience, was on a one-man crusade to get me into surgery and off the fence. His name is Robert Simms*, and although we have never met, I believe Robert saved my life.

Robert was relentless. He sent me pamphlets. He cajoled me, bullied me, told me I was being a wimp, and cure was only available through surgery - He quoted the 10-15-20 year statistics. He knows his stuff. "Besides" he said, "it really isn't a big deal." I don't know if Robert Simms wore me out, convinced me, or scared me, but I finally decided that if this was appendicitis, I'd want the appendix removed, so why not remove the prostate?

Working with Dr. Baldwin, I began giving my own blood transfusions so I would receive my own whole blood back during the surgery, which was now scheduled for April 11, 1996 - 33 of the longest days of my life away.

My family, my sister and wife in particular rallied to my side, and we decided to ask one of the world's experts about the surgery, well in advance of its occurrence. My sister called the offices of a urologic surgeon who has been a pioneer in the development of the nerve-sparing prostate procedure I was to undergo. To our pleasant surprise, his office took the call, and informed us that one of his former students and colleagues was now practicing in the West Palm Beach area, and might be available to assist in the surgery.

We called the former colleague, a Dr. Ned Black. Dr. Black was happy to assist Dr. Baldwin, but he was not covered by my insurance, and if I used him under my HMO plan, and he billed the insurance carrier, I would be exposed to more than 50% of the total cost of the entire hospital and surgical event. Believe me, economics are a terrible reality of healthcare.

Dr. Black and I worked out an agreement suitable to me and my wife, which was that he would assist, and we would pay him privately, directly, as part of the team, without impacting the 100% coverage offered by my HMO. Dr. Baldwin too, was pleased to have such a skilled surgeon join the team, and had supported our efforts to recruit him.

As the weeks passed, my fears, which had bordered on stark terror as a victim destined to die of prostate cancer, began to subside. My blood pressure stayed high, but by the time the week of surgery arrived, I was reconciled and ready to handle it.

I completed the 2 day pre-surgery liquid diet fast and multiple laxative and enema inconveniences, and at 4:30 AM on Thursday April 11, I entered the hospital. I was in good spirits, convinced that attitude is more than half the battle. By 7:00AM I was in a hospital gown, resting in a holding room, talking to my wife. By 7:30, I remember nothing until I awoke at 11:30 AM in ICU/recovery.

I had opted for an epidural block anesthetic, combined with general anesthesia, and upon waking, was fairly lucid, asking Dr. Baldwin if they had successfully saved the nerve bundles which, if removed, assure impotence. I was told that both sets of nerves were spared, and I had done well, and things looked good. But the complete pathology would take several days to be finalized.

Let me digress for a moment, to discuss the fears of incontinence and impotence. My wife and I talked about the risks prior to surgery, and we both agreed that although sex was an important component of our marriage, it was not the basis upon which our love existed. If the nerves allowing erection were removed during surgery, we would find a way to either get around the problem, or learn to live with it. But LIVE became the operative word here.

Incontinence is actually the more frightening aspect of the surgical procedure. What 51 year old, fairly athletic, and very active man wants to visualize himself wearing Depends for the rest of his life? Right, not one. And that becomes the enemy, not impotence, but getting back to normal.

I was out of bed the day after surgery, walking, pushing a pole to which there were enough wires and IV drips to make me look like the $6 million man. But true to Robert Simms's prediction, the pain was minimal, and very tolerable. And recovery is very fast. I was disconnected from everything, pain medicine included, by Sunday, and walking around with just the catheter. On Monday, I was released from the hospital.

Four days, 4 days! Incredible. And the catheter. As a man, I can say that the thought of being catheterized was by far the most frightening aspect of the entire cancer ordeal. In fact, my imagination in general worked thousands of overtime hours for nothing.

The surgery was a breeze. The catheter is a mild inconvenience. I've been out walking every day since I left the hospital, and the remaining 2 weeks until its removal will go by, not as quickly as I would like, but it's not too high a price to pay. In fact, there is a great deal of humor that can be found in that and other aspects of the surgery.

Friday, April 19 was another milestone day. The results of the pathology came back. Was I to be listed as cured, or did the cancer get away from the prostate, and was I looking at radiation, chemo, or more surgery.

It was close. Everything came back perfect. The cancer had come within 1 millimeter of breaking out of the prostate, but in fact had been caught in time. Time. If there is any message that can spell the difference between success and anything else in the detection of this cancer, it is being tested early and annually, and acting quickly once cancer has been found. One millimeter, a few human hairs of tissue thick, was all that remained between me being cured, and a survivor, and my ongoing war with cancer.

I was having a few minor but annoying leaking problems with my catheter and called for an appointment. When I saw my urologist , he was satisfied with my progress, and being 18 days post-operative, agreed to remove the catheter.

The removal of the catheter was relatively quick, simple, and painless. The relief of no longer being attached to a tube is enormous. What is even better, is that I have already discovered two crucial facts concerning my recovery, the first of which even surprised my doctor: 1) I am potent, and experienced several erections even while wearing the catheter; 2) I regained almost complete bladder control within hours of the removal of the catheter - virtually dry as a bone with no leakage.

I will wear a small protective liner for a few days, until I am sure that I have full control, and as the Kegel exercises further improve the muscle tone of the bladder sphincter, I have no doubts that I will be truly fully recovered within a week. I continue to take it easier than usual, but exercise daily by walking, and I feel great!

I have no doubts that the prayers of my friends, associates, and my family with their strong support; my wife, Lisa; the caring work of some fine doctors and incredible nurses; plus some divine intervention all combined to bring me to the point where I can say that I am a survivor.

I look forward to many years of carrying my message of hope, a positive attitude, and continued vigilance to others who will be facing this challenge in the years to come. It is my hope that research on the part of prostate cancer victims, survivors, and doctors will all combine to someday make even the process that I underwent a memory of the past. Until that day, I can only add my prayers to those of the next man to hear the chilling words, "you have prostate cancer."

Ron Kauffman
4/20/96

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* All names of individuals other than the author were changed to pseudonyms to protect the identity of those involved in Mr. Kauffman's care.