THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.

When I was 62 I went in for a routine yearly physical. When the results came in my doctor told me my PSA was a little high, 4.1, and my free PSA was a bit low, I think it was around 0.6. She showed me a chart that said this meant I had about a 30% chance of prostate cancer, but not to worry about it, because it probably was not. She referred me to a urologist, but I was just numb and didn't really register what she had told me. Prostate cancer was the last thing on my mind, since I had absolutely no symptoms of anything wrong with my prostate.

I went home and read everything I could about prostate cancer and PSA testing, and convinced myself that I didn't have cancer, it was a false positive, but I should still go see the urologist.

I went to the urologist a month later and he told me that with my numbers I should have a biopsy. I turned it down, because I was still convinced that I didn't have cancer, and had read some horror stories about the biopsy. Instead I asked for a retest of my PSA and he said I should get re-tested in 3 months, and gave me some antibiotics in case I had an infection.

Three months later my PSA came in at 2.6 and I put prostate cancer out of my mind completely. I figured it was just an infection, even though I didn't have any symptoms.

When I turned 63 my annual PSA rose to 3.8, which was a bit bothersome, but it was still under the magic 4 and I didn't worry too much about it. Instead I began drinking green tea, taking multivitamins, and doing everything I could from a healthy living perspective to help my prostate along. I still had no symptoms of anything.

At 64 my annual PSA went to 5.7 and I thought "Oh Oh." I then went back to an urologist, a different one this time, and the urologist told me that it was probably just an infection because PSA doesn't bounce around like mine does. He said he would do a biopsy if I wanted, but he really did not think it was cancer. I said I could think about it, but before I left the office he would like to do a digital exam. He did the digital exam and told me, "well, I feel a little bump on your prostate, but it may be scar tissue, I still don't think it's cancer." This time I was prepared for the worst, and when he told me that I asked for a biopsy at his earliest opportunity.

A week later I had a biopsy and it was completely painless. He gave me a shot of something beforehand to numb the area, and all I felt was this shot, about the same as a dentist shot. The rest was completely painless and even though I heard his machine that made shot noises, I felt nothing. I was angry that I had read horror stories about the biopsy that were not true and may have delayed my diagnosis.

The worst time was waiting for my biopsy results. My wife and I had scheduled vacation with the grandkids for a couple of weeks, so we went off while I worried every night about my results. When we got back from vacation I got my results: the biopsy was positive on 8 out of 12 samples with a Gleason 3 + 4 = 7. For some reason, this didn't hit me as hard as the earlier news, by this time I expected the worst. As I learned later, a 3 + 4 Gleason is far from the worst, and is curable, as are even higher Gleason scores. The question now was, what to do about it?

My urologist told me I could take 3 months or so to decide what to do, and he was a robotic surgeon and would be glad to do the surgery if I decided that's what I wanted to do.

Back to the internet I went, researching all I could about different methods. A friend with prostate cancer had used seeds and told me how easy it was, so I went to see his doctor. That doctor told me that for my Gleason and percent positives I should not have seeds alone, but also external radiation. At this point I didn't want to deal with any more uncertainties, or with external radiation. From all I had heard, radiation is as good as surgery in many cases, but the PSA never goes to zero, and external radiation can have effects that worsen over time. I decided I wanted to have the worst right away, and get better over time. So I chose surgery and, since robotic seemed like a quicker recovery, chose that.

The hardest thing was choosing a robotic surgeon. My own urologist had done about 100 but I read somewhere that more is better, and 2-300 is the least a surgeon should have to get best results. So I told him I wanted to find a different robotic surgeon with more experience, and he referred me to a colleague who had done over 300. I visited with this and a couple of other surgeons, and finally made my decision based on experience, closeness to home, and how the surgeon came across on a personal level.

As I was being wheeled into surgery I reminded my surgeon that my most important thing was to get the cancer out. Second was recovering my continence, and third was ED. So if he had any doubts he should take the nerves out to make sure to get the cancer. He told me he was glad to hear that because that was also his philosophy. The surgery went very well, easier than hernia operations I've had. The surgeon told me he saved both nerve bundles, and thought he had gotten all the cancer out, but we would have to wait for the pathology report.

The first couple of weeks were tough with the catheter but after that I recovered very quickly and when the catheter came out I found I was completely continent! And am to this day, almost a year out.

The next hurdle was the results of the pathology report, and it came back a little worse than the biopsy, Gleason 7 (4+3) and spots of 8, but the margins and lymph nodes were negative. My doctor told me from here on the PSAs were all that counted, and he expected zero PSAs from me. So far so good, I've had four zero PSAs.

ED remains a problem. I was not in the best shape before surgery, having to take Viagra, but after surgery not even Viagra did more than about a 60% erection. After trying Cialis and Levitra with equal effects, plus headaches and sinus issues, I went to a doctor who specializes in ED. He told me it's still early for me, that sometimes it takes a couple of years or more for full function to return, but that I could try some shots called trimix that I inject myself. I tried them and they work well. So at this point I'm very happy with my outcome and what I chose to treat a prostate cancer that, as it turned out, was pretty aggressive. In fact, the pathology report said that even though the margins were negative, the cancer was less than 1 mm from escaping. I credit my surgeon's skill for being able to remove a cancer that close to the margin.

Sorry it's been so long since my update.

The major update concerns the ED problem that never improved much with Viagra, Cialis, or Levitra. I went to an US-TOO meeting where the speaker was a urologist who specialized in ED and he talked about Trimix. I made an appointment with him and after some initial training on how to properly inject myself, it really works well.

I had some initial aches but, as he told me to expect, that decreased over time. At this point, even though I have ED, the Trimix fixes everyting except the spontaneity, though at our age that's not a large concern for my wife or me.

My PSAs have been <0.1, which is all my urologist cares about. However, once a year I have a physical at the VA center and they use an ultrasensitive test. Six months after surgery it was <.014, which made me very happy. The others, three months apart, were <.1 but at this year's ultrasensitive it was 0.05. I'm extremely anxious about this rise, but my urologist tells me not to worry, get it rechecked in 3 months, and let him know if it's above 0.1

However, my anxiety level is so high that I've made an appointment with a radiation oncologist just in case. I will have another ultrasensitive test in a few weeks and see what the radiologist has to say. My advice to others is to not use the ultrasensitive. Not that it doesn't give good information, but it gives too much information and makes one worry before anything can, or needs, to be done.

Sorry again for the long delay. Because of my anxiety level, I decided to put my disease on the back burner and not even think about it except during periods of PSA testing. That helped a great deal, and allowed me to get back to normal activities. My PSA remained around 0.05 until March 2012 when it took a large jump to 0.13. I was now out of the "zero club" and had a low but "detectable" PSA. This scared me, but my urologist put me at ease by telling me de didn't recommend radiation at this time, because he was afraid of overtreatment. Instead, he advised to get another PSA in 3 months. Once again I placed the disease on the back burner, though not as easily this time, and waited for the June test. I was retested just a week ago and was fully prepared for my PSA to increase to a level at which I would need Salvage radiation. Instead, I was greatly relieved when it only increased to 0.139, and that may not even have been an increase, since it was a different lab and it was done to more significant digits.

So once again I'm in a waiting status for 3 months, and getting back to day to day living. I'm encouraged that this August it will have been 3 years since my surgery, and I'm not yet the biochemical recurrence (BCR) point, which commonly is 0.2 and rising. I've read papers that say that BCR after 3 years indicates a lower risk of prostate cancer mortality. But if I do reach 0.2, and if I do need radiation and hormone treatment, I think I'm mentally ready for it.

On the ED front, yes, I still have it, but with Trimix, a little patience, and an understanding wife, it really is no problem at all. And I'm thankful that I never had incontinence from my surgery.

Well, the other shoe has dropped. After a slow rise in my PSA, it has picked up the pace and is now 0.26. I met with a radiation oncologist who told me now is the time to take action with salvage radiation therapy, which I will begin in a few weeks. It will be 8 weeks every day Monday through Friday, and will take about 30 minutes per day. The radiation center uses modern IMRT machines that do a CT scan before each treatment, so my doctor doesn't expect too many side effects. He said the most common will be urinary urgency and loose bowels but that should clear up within a few weeks of ending the therapy.

I really didn't dig into the chances for success, since I already know that they only average around 30%, but it's the only remaining chance I have for a cure, so I'll go with that. At this time he doesn't think I need ADT along with the radiation, but I'll be meeting with my urologist and he may have a different opinion. So the struggle continues, but I've learned to just take one day at a time, live each day to the fullest, and leave everything else in God's hands.

I began SRT in April 2013, two months of IGRT with a Varian machine. With this machine they take a CT scan of the prostate bed before every treatment, and make micro adjustments based on what they see. I had to drink about 16 oz of water before every treatment and have a full bladder. That was very uncomfortable, and a few times I was gritting my teeth to keep from wetting the platform I was laying on. I also had to have an empty colon, so I timed my radiation sessions for early afternoon so I could have bowel movement before my treatments. My raidation therapy team was very strict about that, and had me get off the table a couple of times and drink more water. I'm so glad they did that, because I've had zero side effects from my radiation. Best of all, 3 months after my radiation, my PSA dropped from 0.22 to 0.04! My doctor thinks it will keep dropping, because whatever cells are left have lost the ability to reproduce, and will die when they try to divide. At this point I don't want to declare victory, because that's always a dangerous thing with cancer, but so far very very good! If anyone needs SRT, I strongly recommend SRT with a full bladder and empty bowels!

Neil's e-mail address is: neilp829 AT gmail.com (replace "AT" with "@")

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