By Steve Redding on his choic of Laparoscopic Surgery (LRP)

This journey unknowingly started in 1998. I awoke one morning with what I suspected was a severe prostate infection, or at a minimum a severe prostatitis. What miserable time that was. I couldn't urinate. I felt like it was going to explode. My prostate felt like it was on fire. When I finally could dribble a few drops, it felt like battery acid being eliminated through the urinary tract. I was an executive with a health-care company then. I traveled extensively in the western United States and was leaving that day for a three-day trip. I couldn't stay home. Our family doctor had just retired and sold his practice. I had never even met his replacement. I called the office and requested they phone a prescription for an appropriate antibiotic to my pharmacy.

The receptionist said the doctor would call at his first opportunity. I stressed the urgency of the request, and told her I was leaving for the airport in a couple of hours. To his credit, the doctor called back almost immediately. However, he gave me the usual pitch about needing to see me first, and the indiscriminate use of antibiotics. It took my best sales pitch, including the fact that I was a former microbiologist and was acutely aware of the problems with the indiscriminate use of antibiotics, before he agreed to call in the prescription. I picked up the prescription on the way to the airport, immediately downed the prescribe dosage, and took the rest of the tablets as prescribed. Twenty-four hours later I was able to void with a greater flow.

This event made me acutely aware that I indeed had a prostate. Though the pain and stricture were gone, normalcy never returned. Urine flow was reduced somewhat and occasionally I experienced the burning sensation on urination. As the years progressed, I experienced occasional bouts of dribbling, not being able to empty the bladder, or, on a rare occasion almost total stricture.

Since I was 50 years old at the time of this event, I decided it was time to include a PSA test in my annual physical. I am Registered Medical Technologist with the American Society of Clinical Pathologists, and had previously managed a hospital clinical laboratory. I had been away from that profession for many years. The PSA test was not in our arsenal back then. Though I understood the methodology, and how to evaluate whether my results fell within a normal range or not, I had to do some research to see what the numbers really meant.

My first PSA level was 3.63 ng/ml. My family practice doctor did a DRE, felt nothing, and said see you next year. The following year, I had a PSA done at the local health fair. The specimens were sent to the Quest laboratories. The PSA result came back at 5.9 ng/ml. The specimen drawn by the FP doc went to ARUP labs in Salt Lake City. I learned much later that these two labs use different test manufacturer's test kits, an important factor. Being an old lab tech, I know that it is important that the same brand of test kit be used each time and also the same lab, if possible, especially when establishing baselines. Upon seeing that result, my FP doc recommended I see a urologist, and I did. The urologist also did a DRE and felt nothing. His comment was "with your history and the size of your prostate, you have BPH. You will live to be an old man. Huge prostates make lots of PSA. Don't worry about it. See you next year." In January 2001 I had a visit to the FP doc for a physical. I did not know it, but he ordered a PSA along with the blood chemistries and blood counts. My PSA was 4.13 ng/ml. In February 2001, I had an appointment with the urologist and had another PSA done also at ARUP labs. This PSA, one month later, was 5.7 ng/ml with a free PSA of 21%. I told the urologist, I want a biopsy done. He said, "No, you have BPH. Biopsies are not without risk. I don't believe you have cancer and don't want to subject you to the biopsy." I said, I wanted the biopsy! We compromised by agreeing to do another PSA in a few months. That PSA result was exactly the same, 5.7 ng/ml, but my free PSA had dropped to 14%. I was out of town when the result came back. There was a message on my answering machine from my urologist asking if I wanted a consult or to schedule the biopsy. Without hesitation, I called his office and scheduled the biopsy.

I had the biopsy on the Monday before Thanksgiving 2001 at age 54. With the ultrasound probe up my butt, the urologist said, there is nothing here. We are wasting our time. You have BPH and will live to be an old man. Thankfully, he did the biopsy anyway. I knew from my clinical laboratory experience that tissue specimens take 48 hours before they are ready for evaluation by a pathologist. With Thanksgiving thrown in, I decided to wait until Monday before badgering the office for the results. My urologist always personally called with my PSA results. By Monday, I still hadn't received a call. I called his office, and was told, they had just gotten the report and put it in the doctor's box. He would be calling me. I gave him until 11:00 AM on Tuesday. At 11:00 AM on Tuesday I left for his office. I told his nurse I wanted a copy of the pathology report. She said they could not give it to me, and the doctor would call me. I could tell from her demeanor it was probably not good news. I said it is my report. We are not talking about acne here. I want to know right now whether I have cancer or not. She then consulted with the doctor. He agreed to let me have the report, but could not see me then. That was fine with me. I just wanted the report. The words adenocarcinoma jumped off the page at me. Surprisingly, my reaction was not fear or panic. I did not then or ever say why me? My reaction was OK I have it, now I need to develop a plan of attack.

The pathology report was very brief, prostate adenocarcinoma, Gleason sum 4 (2+2). The urologist, with hat in hand, later graded me a T1c.

I had a close friend who had been diagnosed with PCa the year before. I did the research right along with him and was his sounding board for evaluation of his findings. He finally elected to have treatment at RCOG with seeds and EBRT. He is doing fine. His PSA is now undetectable. The only complication he is having is not being able to get a complete erection. A quarter tablet of Viagra each time has solved that problem. I left the urologist's office and made a bee-line to my friend's office to give him the news and to borrow some of his resource material. The material included a packet from RCOG and Pat Walsh's book on Prostate Cancer. Based on my friend's experience, treatment at RCOG was a definite consideration. I also felt I had caught this early and wanted to do my own research to be certain RCOG was the right choice for me. I wanted to return his material to him ASAP as he had a friend that was also recently diagnosed. I went to the RCOG website to request the packet of materials. Once the request was complete, a survey popped up. How did you hear about RCOG? One of the choices was Don Cooley. I thought, who is Don Cooley and what does he have to do with RCOG and prostate cancer? A search on Google soon answered that question. I signed up on Don's prostate cancer discussion groups and began reading the mail. As I recall, Terry Herbert had done a post regarding having a PSA done every day for 28 days with greatly varying results. Terry blamed his lab for being inconsistent. Being an old lab tech I did my first post in defense of the laboratory claiming that Terry's activities, diet, etc. were the reasons for the variation and not the laboratory. At the end of that post, I put my statistics, T1c, Gleason 4, and so on. Almost instantly I had a personal reply from Don Cooley stating if I was a Gleason 4 he would buy me dinner. Don recommended I send my slides to one of the experts and cited the URL for the list. I decided that was a good idea and had my slides sent to Dr. John McNeal at Stanford. His report confirmed prostatic adenocarcinoma, but the Gleason score was 6 (3+3). I also found it interesting that 5 of the ten core samples were muscle tissue. Of the five that were prostatic tissue, one core was positive. I was lucky to know that I had cancer!

I found a wealth of information on Don's website, and gained a great insight from the postings. I spent hours each day, reading books and publications, searching the Internet, and reading Don's websites and reading the "mail". I joined a prostate cancer support group. My research told me I had caught this very early. I did not need to panic. Instead, I needed to take my time and make the best decision I could with the information and the treatments available. Also, along the way, I learned from my urologist that radiation did not cure BPH. I also learned radiation is not the treatment of choice in my age group. Those findings gave me second thoughts about radiation treatment. My wife had both chemo and radiation treatment for breast cancer several years earlier. About 3 years after radiation, she developed a xanthoma on her back behind the radiated breast. A xanthoma is a radiation cancer. I also worried that there might be long term effects from the radiation. Another friend had EBRT which fried his sphincter and left him without bowel control. Yikes!

I also visited one of our local health food stores. I have been an advocate of alternative prevention and treatment for many years. I had known the owner of the store for many years and had a great deal of confidence in his knowledge and experience. My wife credits him with curing her cancer after the chemo and radiation did not keep her cancer marker blood tests from going up. The owner suggested that I try In-Tense in my treatment. I did some research on In-Tense. Its main ingredient is Graviola. Graviola had been tested by Purdue University and reportedly found effective in-vitro against cancers including prostate cancer. I had the owner "muscle test" In-Tense and found that my body needed it. Muscle testing or kinesiology involves inserting an herb, product, etc. into the electrical field surrounding the body to see if it strengthens or weakens the body. I have seen this done several ways including holding the product in your outstretched arm while someone else tries to push your arm down. I was a believer. I also muscle tested several other products and put together a regimen that included 10 In-Tense capsules a day, curcumin, CLA, selenium, CoQ10, pectin, enzymes, flaxseed oil and whey protein, green tea extract, lycopene, garlic, a mushroom complex, transfer factor, and so on. I was also taking a product with saw palmetto, and 8-10 other herbs and spices to treat the BPH. That product worked very well, as my flow returned to what I remembered as the good old days. In February of 2002 I had another PSA. My PSA was 4.8 ng/ml and the free PSA was 19%. I knew I was on the right track with the alternative treatment and Watchful Waiting. However, I got a scare in May when I got the PSA results from the local health fair of 6.1 ng/ml. I blew it off as I remembered that they use a different methodology and a previous result from the Quest lab had been high.

I continued to do my research, but at a more relaxed pace since I was convinced I had both the cancer and the BPH under control with Watchful Waiting and my alternative regimen. But, the 6.1 ng/ml PSA was nagging at me. I started having thoughts that perhaps I was controlling the BPH and not the cancer. In early June, I attended a birthday party for an attorney friend of mine. One of the attendees was my daughters' pediatrician who I had known for 20+ years. I knew that he had had prostate cancer. I was able to catch him confidentially and quizzed him about his treatment. He was a year post RRP, was continent, but impotent at 57. I had discussed RRP with my urologist, who was also the pediatrician's urologist. He had a 60% potency rate and a 70% continency rate, good numbers for RRP, poor numbers for a now 55 year old with a gorgeous wife. Recovery from his RRP took 6 weeks, catheter for 3 weeks, pain pills for at least 3 weeks. One comment the pediatrician made to me really got me thinking. He said his dad died from prostate cancer. It was a horrible death. When he found out he had it too, his reaction was to get the cancer out of his body at any cost. I guess his cost was impotency. I wasn't sure I wanted to pay that price.

Ironically, a week or two after being diagnosed, I happened to catch part of a program on Discovery Health about a Dr. Mark Kawachi doing laparoscopic RP at City of Hope in California. I checked out the LRP but felt it too new and untested. I did file Dr. Kawachi's name away for future reference.

I continued to have this nagging feeling that I needed to go mainstream. I had all but ruled out seeds or RCOG because of the BPH issue, and fear of the long-term effects. I felt RRP was too invasive, and had especially poor numbers for continency and potency. I looked at cryo. I looked at a procedure where metal composition rods were inserted in the prostate. The heat generated in these rods from an MRI supposedly fried the prostate without damaging surrounding tissue. There seemed to be no satisfactory treatment for PCa. All had their limitations and drawbacks, or were too new. I kept gravitating back to the laparoscopic procedure. I discussed it with my urologist. He felt it was too new and that the surgeons needed to have a minimum of 50-60 procedures for it to start being routine.

I began looking at all the institutions in the US that performed the LRP. I looked at Mass General, Johns Hopkins, Henry Ford, Cleveland Clinic, and City of Hope. I also considered Vallencien in France, and Dr. Kongrad in the US. My insurance would not pay for treatment in France. I thought about paying for Vallencien out of my own pocket. However, someone posted they had a bad experience there. Kongrad did not use robotics. I developed a checklist of questions for comparison of each. My primary criteria for evaluation were the number of procedures done, the results, complications, conversions, and use of robotics. Of all the US institutions, only Cleveland Clinic and City of Hope had done enough procedures to make me comfortable. I contacted Dr. Gill at Cleveland Clinic. At that time, he had done 80 procedures, but he would not publish any potency numbers. I contacted Dr. Kawachi at City of Hope and found he had done over 100 procedures and met all my other criteria.

In June of 2002, I made an appointment with Dr. Kawachi. I was impressed with City of Hope and Dr. Kawachi. He quoted numbers of 99% continency and 85% potency for my age group. Even so, I still had reservations.

In July 2002, I had another PSA. The results were PSA 4.8 ng/ml and free PSA of 21%! Watchful Waiting and my alternative regimen was working! Did I need mainstream treatment? Maybe not. At this juncture I was totally confused, mainstream or WW? I finally decided to schedule the surgery thinking I could cancel it later. I scheduled the surgery for October thinking it would be between mountain biking and ski seasons.

I think the deciding factor was losing three friends in 2002 to cancer. Though only one was diagnosed with PCa, I suspect all began with PCa, but it was the mets that killed them. One friend was 57 years old, one 73, and the other 81.

On October 1, 2002 I had the laparoscopic radical prostatectomy at City of Hope with Dr. Kawachi as my surgeon. By then, he had reportedly done over 200 procedures. I was under anesthesia for over 5 hours. The actual surgery reportedly took 4 hours. I did not wake up until I was being wheeled from recovery to my room. I do remember my transport was a gentleman named Eddie. Eddie was a great guy and came by to check on me periodically. I had no pain from the surgery. The next day I noticed my abdominals felt like I had done a 1000 sit-ups the day before, but was only sore when I tried to move. My nurse finally convinced me to take a Vioxx (removed from market) so I could move around in bed better. I took one Vioxx (removed from market) the second day and one the third day. That is the only pain medication I took for the surgery recovery ever. The catheter, which I had dreaded so much, was really a non-event. I actually looked forward to hooking up the bedside bag each night as it allowed me to sleep through the night! I could drink all the water and other liquids I wanted with uninterrupted sleep!

I had been in excellent shape prior to the surgery. I am retired and logged many miles each week either on the mountain bike on the many single track trails in our area of Colorado, or on the road bike. I also did resistance training to keep the upper body in shape. I played handball, and did a lot of hiking. The day after surgery, I walked around the hospital as much as I could. The second day, I walked over a mile around the beautiful hospital grounds. My wife and I had reservations at the Laguna Cliffs Marriott in Dana Point prior to the surgery which was originally scheduled for October 8th 2002. The surgery was changed to October 1st, but we decided to keep the reservation anyway. We were in Dana Point for four days after my dismissal where we did a considerable amount of walking logging over 4 miles the 4th day after surgery. I never passed a restroom without dumping my leg bag. The leg bag was a nuisance as it seemed to be always full and banged on my leg when I walked. I also developed an inflammation at the tip of the penis probably from walking.

Dr. Kawachi normally removes the catheter in 5 days. The fifth day for me was a Saturday, so I was scheduled for a follow-up visit and catheter removal on Monday, 7 days after surgery. The catheter removal was the worst part of the whole ordeal. The nurse injected over 100 ccs of fluid into my bladder and told me to hold it. She drained the balloon, then gave the catheter a very vigorous yank expecting me to hold the fluid in my bladder. When the tip of the catheter reached the inflamed tip of my penis, it caught. Instead of trying to ease it out from there, the nurse got another wind-up and yanked it the rest of the way out. She then had me stand up asking me to continue to hold the fluid, then release some of the fluid, then hold it. This was repeated until the bladder was empty. I did not do real well in holding the fluid. I was also having intense pain in the tip of my penis from the catheter removal. She then gave me a very large pad to stick in my drawers and left.

After that ordeal, Dr. Kawachi came in. He told me the pathology report indicated the cancer was contained in the prostate and the margins were negative. He said we have three rules for our LRP patients, eat anything you want, drink anything you want, and do anything you want. I must say I was surprised! I asked about biking and was told fine as long as your seat puts the pressure on the pelvis and not on the perineum. I was to find out later his rules were very optimistic. I could not drink coffee, decaf or otherwise. I could not drink orange or tomato juice, nor eat spicy foods without losing control and drizzling.

That afternoon, after seeing Dr. Kawachi, and feeling fine except for the soreness in the tip of the penis, we went shopping first for some industrial strength pads. I found I was drizzling the whole time we were shopping. It was very annoying. Where was my leg bag when I needed it? Later that evening, I started passing copious amounts of bright red blood. Because of the drizzling, I was afraid I would wet the bed, so we stopped and purchased some diapers. I woke up in the middle of the night from the urge to urinate. I found the diapers were only wet from sweat. They were, in fact, miserable to sleep in. I found that I was continent through the night and never wore the diapers again. I did wear a pad to bed, but never needed it.

We were planning to start our drive from California to Colorado the next morning. However, I was still passing copious amounts of bright red blood. So, our trip took an unscheduled stop at City of Hope. I was examined by Dr. Kawachi's nurse practitioner. She consulted with the Department Chief, Dr. Tim Wilson. They were reticent to agree the bleeding was from the catheter removal, and instead, Dr. Wilson said it was probably from scabs peeling off the anastamosis. They felt it was inconsequential, so we began our journey home. I was actually pretty comfortable during the two day drive home. I was advised not to drive, nor would my wife let me.

Throughout this whole ordeal, I found myself to be totally continent through the night, and generally continent while sitting. While sitting, I occasionally squirted when changing positions. Standing and walking was an entirely different scenario, as I constantly drizzled. I walked and hiked as my exercise. Later on, I found that I was continent while walking uphill, but drizzled walking downhill, walking on flat surfaces, or standing. Go figure!

I passed blood for about two weeks or so. Then it stopped except for one brief episode in the shower about 3 weeks out. I had no discomfort from the surgery, but found the perineum to be generally tender. I finally decided the pads were irritating it, and went to a smaller pad. That helped, but didn't entirely eliminate the tenderness. A fellow Kawachi patient mentioned in an email, he was cutting the pads in half. I tried that and got instant relief, but found I had furry dingleberries all over old Johnson and my shorts. After that I began duct taping the cut edge on all the pads.

Six weeks or so after surgery, I got an order for a PSA from my local urologist. Waiting for the result caused some anxiety. Elation was an understatement when I got the result of <0.01 ng/ml!!

I also requested the pathology report and doctor's notes be sent to me from City of Hope. They arrived about 6 weeks after surgery. The doctor's notes of the surgery itself were generally a description of the procedure. The notes estimated my blood loss at 100 cc.

The pathology report, on the other hand was quite interesting and disturbing. The pathology report confirmed the Gleason 6(3+3), but indicated cancer was found in both lobes. The pathologist now graded it T2c. The closest margin was 0.05 cm. from the tumor. Yikes! 0.05 cm is not much of a margin in my estimation! From the measurements, I calculated the prostate to be 138 cc. I had acute and chronic prostatitis, and a cyst.

The good news was the tumor was contained in the prostate. No perineural infiltration was seen. And, the lymph nodes and seminal vesicles were negative for cancer!

In reflecting on the pathology report, I felt my hair starting to stand on end. I had done WW for several months and was convinced I was winning! The pathology report showed the exact opposite was true. The cancer was growing not retreating! It was in both lobes, and 0.05 cm. from penetrating the capsule!! The alternative regimen had not worked! I was stunned, because I was convinced the pathology report would champion the alternative treatment. At the same time, I was relieved. My gut told me to have the surgery. My gut was right. I had the surgery, apparently, just in time.

At this writing, I am now four months post-surgery. Though the recovery from the surgery was virtually overnight, an LRP is still an RP. Recovery from an RP be it LRP or RRP takes time. I have been without pads now for seven days without a major incident. I am playing handball without a pad! This is major progress! For the last week, I have started to see encouraging signs of life in old Johnson. My erections are probably 50%. I have felt stirrings since the beginning, and some turgidity, but the last week has been very encouraging. My local urologist told me to forget about sex for 3 months and bicycling for 6 months. He suggested I buy a pump to keep the paraphernalia in shape. I have done that, but with somewhat disappointing results. Believe them when they tell you you can have an orgasm with a soft penis. Early on, the orgasms were just a whisper. As time marched on, the orgasms became more intense, and are now longer and more intense than pre-surgery. They are dry, except for the occasional squirting of urine. Be sure to empty the bladder first! Fortunately for me, my wife has been very supportive and encouraging throughout.

In looking back over my experience, the greatest problem for me was the unknown. City of Hope was not good about telling me what to expect at any point during the process. If I didn't ask, I didn't know. Most of my expectations came from asking questions or reading the mail on Don's discussion groups. Of course, everyone is different. As a result of that and the skill of the surgeon, each responds differently. In spite of that, I hope my candor eases someone's fear of that unknown. Whatever path you take in your treatment, seek the best surgeon, or the best radiation treatment center. Take your time. Do your research. Find that treatment that seems best for you, then find the artist to perform the treatment!

Even though my last PSA in <0.01 ng/ml, I plan to have a PSA, and a visit with the urologist every 6 months. If my PSA continues to stay undetectable, and I have no further issues from the surgery, I will eventually cut the visits back, but will probably continue to have the PSA done every 6 months. Do I have a contingency plan, if my PSA starts to increase? The short answer is yes. Given today's technology, the choice would be EBRT. I hope I don't have to make that decision. If I do, I hope tomorrow's technology offers a pill or an injection!

Whatever path you decide to take on your journey with prostate cancer, just remember you are not alone. Don't be embarrassed to post a question on the discussion groups. Gather all the information you can, and make an informed decision!

Best of luck and God bless you!

Steve

February 2, 2003