THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

I have learned a lot through stories posted on Yana. I appreciate all of the contributions and management of this website. It is the best, most informative, website I have found on the web. I want to tell my story in hopes that it may help others.

I am 50 years of age and never suspected that I might develop prostate cancer at this relatively young age. I am in good health but have gained a few pounds and had elevated cholesterol levels for the past few years. I have had no symptoms other than needing to get up to go to the bathroom one or twice most nights. The saying "a dog in the hunt doesn't know he has fleas" really applied to me. I was too busy to pay attention to any silly symptoms. However, looking back there were a few signs.

I had blood in my ejaculate a few years ago. My general practitioner and urologists were not overly concerned. Eventually that cleared up with only one slight recurrence about a year later and then nothing. My PSA level was 2.5 with a negative DRE. After a few years, I never thought about it again. The second sign was a slightly reduced stream but nothing that I was concerned about.

I had an annual check-up and my PSA came back 5.1 in September. The nurse called and insisted I see a urologist. She explained that the level should be below 4.0. The number did not mean that much to me at the time and I have to admit, she seemed a little pushy. Frankly, I was annoyed by her persistence (I have since thanked her). I went to the appointment with the urologist and oh what fun. First there was a DRE, a transrectal ultrasound, followed by a cystoscopy; a biopsy was scheduled for the following week. The urologist explained that I had an enlarged prostate but could not feel anything unusual. He said I had a 75% chance of being cancer free based on what he saw at the time.

Prior to the transrectal ultrasound guided biopsy (TRUS), I read stories of how painful these were. When I was on the table, I was not looking forward to it. No anesthesia or pain reduction methods were used. When he popped the first one, it was uncomfortable, but I advised him that it "was not too bad." He shot 16 total and the more he shot, the worse it seemed. It wasn't unbearable but I was sure ready for that last shot. I must be a big woosy but ouch that hurt. I had a dull rectal pain that night that was completely gone by morning.

The following week, I got the bad news 1 core out of 16 positive, Gleason 3+3=6. I was stunned by the results. In the denial phase, I learned that the biopsies are wrong only about 1 percent of the time, shucks. The urologist suggested another biopsy in that area, oh boy. He shot in the top left corner 8 times plus two in the vas deferens. Two of the 8 cores in the prostate were positive, the vas deferens was clear.

The urologist recommended an open radical prostatectomy surgery given my age and explained that he could do the surgery locally. He further explained that I would experience incontinence for a while but it would get better over time. He said that incontinence could be overcome with pads or collagen shots to the sphincter muscle or even sphincter implants. He also explained that the nerves running beside the prostate would be cut and consequently I would not be able to have natural erections in the future. I must say, this was not good news. It was the beginning of my research project.

Since surgery was recommended, I started looking at the options such as nerve sparing, cure rate, side effects, and problems. It became obvious to me that the robotic Da Vinci method had significant advantages (less blood loss, quicker recovery time, and less scarring). I found that most radical prostatectomies today were done using the robotic method. A recent study shows the rate of prostatectomies using the robotic procedure to be 81% in 2009. It also seemed to me that surgeons using these techniques were focused upon nerve sparing and quality outcomes, and claiming to have, (1) good cure rates, (2) low rate of incontinence, and (3) low rates of impotence. [It must be said that there is still a considerable controversy as to whether the results of surgery using the Da Vinci machine are superior to the old 'open' surgery techniques. What is clear that a surgeon with a good record gets the best results, no matter what the method.] Much of these results were related to their experience and advanced nerve sparing techniques. My local urologist, when asked about nerve sparing, gave a less-than-enthusiastic discussion of how he could spare the nerves in certain cases.

I am young and hopefully have many more good years. I don't think I could be a candidate for Active Surveillance; I really want this thing out of me. I admire the guys that can hang in there and monitor the cancer; I don't have the guts. I know the cancer is slow growing and I have time. However, my real concern is that the cancer can grow outside of the capsule thus complicate the treatment options at some point in the future.

There have been many great advances with all of the available options including radiation, Proton Therapy, Brachytherapy, and most recently HIFU. I am most intrigued with HIFU. While it does have a few early complications, it seems the least intrusive to me although it does tend to cook things down there. I would like to see some long-term studies before strongly considering that option. The treatment options are numerous and involve many different factors, such as your diagnosis, age, health, mental toughness, and spouses input. After three weeks of non-stop study, I chose to have robotic surgery.

While my analysis will not fit everyone, I felt that surgery was the best option for me. With surgery I had the later option of radiation but if I chose radiation, the future option of surgery would be complicated or impossible. Also, I have a "get 'er done" personality. I would rather get it over with and move on. The real choice for me was open versus robotic. Robotic was less intrusive, less painful, less risky in terms of blood transfusion, and quicker. The risk to me was in having an inexperience surgeon behind the Da Vinci controls. However, since I live in a county where I can pick the surgeon, that risk seemed rather low. The only other negative that I could find was the risk of intestinal adhesions to the port incisions but it seems this risk is very low as well.

Oddly, I agonized some about letting my local urologist know I was going to have the surgery done out of town. I know he wanted to do the surgery and I did not want to insult him or be disrespectful but it is my body, my life, and my choice. He works for me, not the other way around. He took the news very well and gave me copies of the biopsies. He also left me with some material showing that robotic surgeries had lower cure rates and greater side effects than open surgeries. I had previously read the article and it makes good sense when you include every surgeon, even ones that are doing their very first surgery with the robot. I image the first time you drive the Da Vinci robot, you will not do your best work; much like the first time we drive a car. However, with time and experience, I can see that a surgeon will do much better work. [One study suggests that a surgeon needs to do at least 250 procedures before he has 'mastered the machine'.] The solution there is to pick a surgeon with good volume and a good track record.

After much study, I decided on Randy Fagin in Austin. He has a high volume of surgeries and I have read many good stories (and a few not so good), but from what I can tell he is one of the best. He is only five hours from my home. My surgery is scheduled for December 1, 2010. I feel good about the cure rate, only slightly concerned about long-term incontinence, but based on my studies, the biggest challenge could be future ED issues (hopefully not). I will keep you updated after the surgery.

The first section was submitted some months back and the update was submitted last month, but neither made it through cyberspace at the time:

Doctor Fagin has assembled an outstanding surgical team at Westlake Hospital in Austin. It was obvious to me that the entire group (nurses, anesthesiologist, technicians, x-ray tech, etc.) knows the process very well. They have also negotiated a deal with a resort located about five miles from the hospital, which is a convenient and great place to stay. The hospital is a well-organized, modern, aesthetic, and efficient. It IS a surgical destination.

Although we had corresponded with his office prior to the trip, my wife and I met Dr. Fagin for the first time two days before the surgery. He is very professional, personable, knowledgeable, and a great communicator. Also, he is the type of guy you trust to work on you with a knife, or a robot in this case. I asked him if he could see the cancer at the margins if present. He explained that the cells are microscopic and generally it would not be noticeable. He measured my prostate with an ultrasound and then answered a few questions. We went to the room to drink the magnesium citrate, aka "turbo-lax," and started the liquid diet.

I kept reading about people having gas pains after surgery but prior to first passing gas. Therefore, while on the two-day liquid diet prior to surgery, I avoided products containing sugar such as orange juice, cider, and jello. Sugary products are strong gas producers in my system, and while allowed on the liquid diet, they would set me up for a flatulence contest. Avoiding these products seemed to work for me. I did not have any gas pains after surgery. This could just be a fluke but it might be worth a try. Basically, I stuck with protein shakes the first day and broth the second day and skipped all fruit juices.

The surgery went quickly and uneventful. I was scheduled for 7am and was awake and in the room by 11 am. I was sore but there was little pain. I walked around the hospital that night. They even have an outside park area with a fish pond the nurse suggested we go; that was different in a hospital setting. We saw the doctor at 5 am the next morning and he said we could go whenever we were ready; I was ready. We headed back to the resort, stayed overnight, and then headed out of town to our lake house about 2 hours away. The drive seemed bumpy, or I noticed bumps more than normal, but it was a pleasurable trip (maybe it was the pain pills). This was the only time I took a pain pill after leaving the hospital and then it was only one-half a pill.

The doctor started me on Viagra 100mg every other night after the surgery. The intent is to increase blood flow in that area to promote healing. The second dose, which I cut in half, was taken a couple of hours before bedtime. The catheter was pretty uncomfortable and the thought of Viagra working with a catheter in place seemed like a nightmare to me. Therefore, I cut the dosage in half. My body responded very well to the Viagra and while I was encouraged, let's just say I had some unplanned "developments." I remember thinking, "please no, not now." The pain did slow everything down pretty quickly, however.

The catheter really irritated the tip but it got much better near the end. The key seemed to be pulling the tip back, keeping the catheter clean, and lubricating well with Neosporin (I hope that wasn't too graphic). By accident, I found a "Neosporin + Pain Relief" instead of plain Neosporin. The pain relief formula seemed much better. Also, I placed a small piece of plastic wrap over the entrance so the lubrication would not rub off.

The catheter, which was the worst part of the entire process for me, was out in seven days. Those seven days were tolerable and got better over time, but they were very slow. I went shopping once or twice but couldn't get around very well due to pain at the catheter entrance. I just had a hard time getting everything situated where it wouldn't move. I thought back to my original urologist recommending open surgery and having the catheter for three weeks. I can't imagine wearing a catheter for three weeks. That single fact alone (7 versus 21 days) made the decision to go robotic a no brainer for me, not to mention a one-day versus ten-day hospital stay. The time difference doesn't sound that bad until you have a catheter in you; it is a major difference. It is also a major difference for your spouse as well.

The x-ray was nothing to be concerned about. Even though they filled the bladder with a marker fluid, there was no pain or discomfort. I didn't even have to disrobe; she just hooked into the top of the catheter bag. Also, pulling the catheter was never uncomfortable. It was different, but not painful.

I got the catheter out on December 8th (7.5 days) and wow life was immediately better. I was pretty continent, which was an unexpected but a great occurrence. I went out to dinner on the other side of Austin that night and got stuck in traffic after drinking three glasses of tea with no mishaps. The nerves were a little messed up, or different, and I had to learn how to drive again down there. For example, when going to the restroom, it seemed ready to go before I was. It was nothing major, just different. After pulling the catheter, the doctor went over the biopsy report. The problem was worse than thought. The cancer was on both sides of the prostate (Bilateral). It covered 25% of the left side and 10% of the right side but fortunately it was all Gleason 6. There was a focal extra prostatic extension at the left base but no seminal vesicle or lymph node involvement. The positive margins were proximal and bilateral. The stage is pT3a NX MX.

I think this speaks to the effectiveness of a needle biopsy. The right side had 10% involvement, yet none of the 8 transrectal needle biopsy cores taken on that side saw it. The left side had 25% involvement and only one of the 8 original biopsy cores saw the cancer. This shows that a biopsy could very easily miss the cancer. To the credit of my original urologist, he shot 16 cores versus the typical 12. The original transrectal biopsy found cancer in only one of the 16 cores, yet the cancer was significant in both sides.

I thought we caught it early but apparently not. Positive margins happen about 10 to 15% of the time. That is the bad news. The good news is that I ran the new results through the Sloan Kettering post-operative nomogram and it shows a progression-free probability of: 98% at 2 years, 95% at 5years, 93% at 7years, and 91% at 10 years.

If the margins had been negative, the progression-free probability would have been: 99% at 2 years, 99% at 5years, 98% at 7years, and 97% at 10 years. I am not sure at this point if I am working the nomogram correctly, but if I am, having a 91% probability of being progression-free in 10 years is very encouraging. Similarly, the ASCO postoperative nomogram yields 113 points corresponding to a 92% chance of non-recurrence at 10 years.

If the PSA starts to rise, radiation is another tool in the arsenal, which seems fairly effective after having a prostatectomy but that is a bridge to cross some time down the road, if ever. I was a little bummed about the positive margins but it doesn't seem like a major risk factor. The doctor did not appear overly concerned at this point, especially with a Gleason 6. He is actually a little puzzled and is having the specimen re-evaluated. It is apparently unusual to have a Gleason score of 6 (non-aggressive) and at the same time have extra capsular penetration (aggressive).

I made it back home eight days after surgery with no catheter and felt great. I was fairly continent with just a few major drips when not paying attention during a sneeze or cough, but nothing concerning. I expect this to get better with time and I am already seeing improvement. I am very glad I had done Kegel exercises for six weeks prior to surgery. I know it strengthened the pelvic muscles, but more importantly, it helped me develop control of the various muscles. I did not have that control when starting the exercises. In fact, I originally had a little trouble finding the correct muscles. Viagra also seems very effective at this point but I am trying to keep that at bay until further healing.

Unless the second biopsy report shows something different, the plan is to monitor the PSA level, make a few diet changes, and enjoy life. Radiation will be considered if the PSA starts climbing but statistically that will not happen and if it does, it will be some time down the road.

My wife was a real trooper during the process. I will never be able to pay her back for all the help and care throughout this process. However, I have promised to be as much help to her as she was to me if and when she has her prostate removed, haha. I must also add that all the stories on this site, most of which I have read, removed most of the anxiety in this process. I knew what to expect the entire time; it was invaluable; thanks to all for that.

Continence continued to improve quickly over the first ten days after the catheter removal. In fact, I had a party to go to on the sixteenth night post-surgery and that was the last time I regularly wore a pad. After the party that night we even had a spontaneous non-Viagra event although that was against the doctor's orders of waiting three weeks. The next morning I walked over some very rough terrain deer hunting for approximately two miles. That afternoon, I noticed blood in my urine and the passing of some clots. It is apparently normal based on some forums I read, but it prompted me to slow down a little to allow the healing to progress.

Three days later, 19 days after surgery, the bleeding stopped, continence was good and I was feeling great. I climbed some stairs on a Stairmaster to get some exercise. I did 20 flights and that felt good, so I went for it and slowly climbed 100 flights. Immediately, I had very bloody urine. Also, I was passing dark thick blood clots. It was so thick that some would not come out or would come out in bursts. I had very high anxiety and feared having to have a catheter to pass the clots. I kept flushing and urinating often and by 3am it cleared. I went to work the next morning and again started bleeding. I came home and reclined for a few hours; things cleared up quickly. Obviously, I had overdone it and probably ruptured an artery. The lesson to learn here is slow down and let your body heal.

After the aforementioned party, I would have occasional days with some mild incontinence. I quit wearing pads altogether at six weeks, as continence is very good. I now only occasionally take Viagra. It helps but is not necessary.

My eight-week post-op PSA was 0.005, which is essentially zero per the doctor, which was obviously fantastic news. The second opinion post-op biopsy performed by a lab Aureon and gave a 23% percent of PSA recurrence within 5 years. However, the better news was a 1% probability of progression of the disease (Clinical Failure) within the first five years.

April 18, 2011 Update It has now been 4-1/2 months since the surgery. Continence is very good and I have not worn a pad in a long time. I occasionally have some slight leakage when bending in certain positions but it is less than a drop or two, never noticeable, and only occasionally then. On a normal day there is zero leakage.

Regarding impotence, Viagra was very helpful early on and it still helps but is certainly not necessary. While things are not like they were when I was 18, things are now very good. I have not taken Viagra in a few weeks. I am very thankful for the outcome to date.

It has now been 16 months since surgery and my last three ultra sensative PSA tests were 0.006 (5mo postop), 0.012 (9mo postop), and 0.014 (12 mo postop). These are essentially "undetectable" PSA results. I still have some PSA anxiety since I had positive margins. However, continence is very good and I have not worn a pad in over a year. In certain squatting positions, I almost have some leakage but have learned to avoid those positions. A leak is very rare and only then maybe a drop or two.

Regarding impotence, I believe that department is back to normal for a guy my age. I have not used any ED drugs in a very long time. I no longer have concerns about being able to perform. I am very thankful for the outcome to date.

I must also thank Terry again for developing and managing this site. It helped prepare me for what I was facing and helped with a decision that was right for me. I was number 1000 and I reaped the benefit of the experience of many fighting the battle ahead of me. Fortunately, I had a good outcome and I think that was largely due to the skill and experience of the surgeon and surgical team that worked on me.

My recent PSA test was <0.015 and this is 30 months after surgery. I have no problems with ED or incontinence. I often forget I ever dealt with this problem. I feel very fortunate and blessed. Having Prostate Cancer did change my life. I am back to my high school weight, I run almost daily, and watch my diet. I am in the best shape of my life. Consequently, I enjoy physical activities much more now and I have a richer life.

I am now 3.5 years post-op and have a zero PSA. I don't have any problems with impotence. Regarding incontinence, I don't have any problems but I can sense the onset of leakage in certain positions, such as certain squatting positions, but there is never any actual leakage; I just avoid those situations.

I have become a health nut. My diet now consists of limited sugar and no fried foods. I do 3 to 6 mile runs 3 days a week. I am down to my high school weight and I am in the best cardio shape of my life at age 54. Consequently, I have taken on hobbies that are physically challenging and therefore improved the quality of my life. Prostate cancer was a wakeup call for me.

Mark's e-mail address is: markburkett AT outlook.com (replace "AT" with "@")

NOTE: Mark has not updated his story for more than 15 months, so you may not receive any response from him.