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

When I turned 50, I started getting annual physicals. My mother's side of the family has a lot of cardio issues and my father's side a lot of cancer. At my 10th physical, my PSA was 4.1, up from 3.6 the previous year. My doctor suggested retesting in 6 weeks since several things can cause PSA to be elevated. Six weeks later my PSA was 4.3 so my doctor referred me to a urologist. The MRI didn't show anything, but the results of the biopsy were 6 of 12 cores with cancer and a Gleason score of 3+4=7. Because of the amount of cancer in my background, and because there is some concern that radiation and other options could make surgery more difficult if it became necessary, I opted to have surgery right off the bat. The doctor had some concern that the cancer might have spread, so he told me that he did not recommend trying to save the nerve bundles. I totally agreed. He also said that he would take the seminal vesicles and lymph nodes out at the same time. No problem!

One thing he told me that was a surprise was that, when they "got in there", if it was obvious that the cancer had spread, they would just close me up and we'd go on to step 2. This seemed strange to me but he explained that if taking out the prostate wasn't going to get all the cancer anyway, it was better not to have the risks and possible side effects that come from removing it. So, in the recovery room after surgery, as soon as I woke up, I asked the first person I saw if I still had a prostate. When they told me "No", I was elated. While I was still a bit giddy from the anesthesia, I proudly told everyone I saw that, "I don't have a prostate"!

My surgery was in January 2009, one week after my 61st birthday. It was successful and the path report showed all negative margins! My Gleason score remained 3+4=7.

My recovery was about what seems to be typical, except it took me a bit longer to get totally off of incontinence pads. I could have probably stopped using them sooner, but I wanted to be sure that there would not be any "accidents", so I waited until I was "dry" for several weeks before I stopped using them. I was "dry" overnight within about a week after the catheter was removed, and stopped all pads by 9 months post surgery. I still have occasional leaks, which are really frustrating because they just happen - they are not the result of trying to "hold it" or any physical activity. In fact, sometimes they happen when I'm just sitting and watching TV. They are never very large, usually just a few drops, but they are very frustrating. Otherwise, I'm pretty much normal in the urine department.

Because I opted for non-nerve-sparing surgery, I am impotent. (I hate the term ED - my equipment is not dysfunctional; everything I've got is working as it should - I just have some parts missing.) Anyhow, I have been using a VED, (vacuum pump), more or less daily since about one month post surgery for "therapy". In the past month, (now 14 months post surgery), I have had a couple of instances of partial erections all on their own, so maybe the "therapy" is helping.

My latest follow-up PSA reading was "undetectable", which I have come to consider the most beautiful word in the English language!

I was very fortunate to have three men in my church who have also had PCa who quickly offered themselves as a support group. I have also "chatted" with several guys on a couple of these web sites. I have to admit that I am somewhat surprised by the bond that seems to exist between all of us "survivors" - everyone knows that men never "open up" or talk about anything personal or important - but every man I have met who has also had PCa has been more than willing to talk about his experience and offer support. I want to do the same. I just wish that there was some way that we could get the word out to all of those men who have not yet been diagnosed with PCa so that they would be getting checked, and would be much more pro-active patients if/when the reality of PCa becomes a part of their life.

In the relational department, my wife and I are much closer now than we were pre-PCa. She has been a wonderful support person for me and been with me every step of the way. We talked about our fears/concerns/feelings quite often when I was first diagnosed which I think really helped. There's something about crying together with someone that really helps you to bond with them. Obviously, our sex life is not what it had been before, but we have found ways to express our love in other ways, including physically. I would never encourage anyone to have a life-threatening disease in order to improve their marriage, but in my experience, that is precisely what happened. We have focused on what we have, including life and each other, not what we lost, and I think that has made a world of difference.

So, here I am, 14 months post surgery, very much alive and well. I just finished shoveling 10" of wet, heavy snow from our driveway with no PCa-related problems, no leaks, no extra pains, etc. Were it not for the blue ribbon pin that I always wear, anyone who sees me and doesn't know me would never know that PCa had ever entered my life. And I thank the Lord every day that it has now left it! Life and love are good and I'm happy to be here to share them!

I am 2 years post surgery and my PSA continues to be < 0.10, or "undetectable", (my new favorite word!). Since I did not have nerve sparing surgery, I am still impotent, but Trimix injections are working very well for me when the time is right.

I am probably as "dry" as most 63 year old men, my biggest incontinence issue being occasional leaks. I have a few drips after urinating, but occasionally, when I am just sitting and watching TV in the evening, I will leak a little urine. Never enough to soak through my underwear, but enough to be a nuisance. I continue to do Kegels twice a day.

Based on my pre-surgery biopsy and other tests, my doctor expected to find the cancer spread beyond my prostate. Primarily for this reason, and because I wanted it "out of there", I opted for surgery, so my doctor could get in there and see what was what. As it turned out, the cancer was confined to the prostate, but I am still comfortable with my decision that surgery was my best choice.

The impotence is my most significant long term side effect, but it is not a life ending event. Intimacy is still very possible and finding our new "norm" has been interesting for my wife and I. Trimix injections work great for me, taking about five minutes to reach full effect and lasting for two+ hours.

Otherwise, I am in fine health and enjoying my life as a prostate cancer survivor!

I am 3+ years post surgery and nothing has changed. At my last check up, my PSA was still "undetectable" and will hopefully stay that way.

Since I had non-nerve sparing surgery, my erections are still "on demand" with trimix injections when the time is right. Interestingly, it will sometimes fill on it's own, but calling the result an erection would be stretching the truth, (pun intended). I used a pump for about 2 1/2 years after surgery but have now stopped using it. When I went back to work full time it just didn't fit in with my new schedule. I have not noticed any shrinkage and the injections still work fine, so apparently that's not a problem. From the postings I've read, it seems that many men are more concerned about ED than they are about getting rid of the cancer. I wish I could tell them all that a good life, (sexual and otherwise), is still very real, even with ED.

Probably the most frustrating thing about my whole PCa experience is the slight incontinence I still have occasionally. I will be just sitting and relaxing and will suddenly leak a few drops. It doesn't seem to be related to my liquid intake, tiredness, or anything else - it just happens. Fortunately, it is very infrequent. I continue to do Kegels twice a day and hopefully the leaks will eventually stop completely. Honestly, I don't know if this is actually related to my cancer and treatment or is just a typical aspect of getting older. Not many 64 year old men talk about their incontinence issues!

If I had to do it all over again I would still opt for open surgery. The recovery took a little longer than robotic would, but it was not really a big deal. Supposedly, there is no long-term difference between the various methods of surgery or radiation treatment, but after following several prostate cancer web sites for the last 3 years, it seems to me that those who opt for surgery have less complications. Besides, I really like the fact that my surgeon was able to see and feel what was going on inside me and could react accordingly.

Life is good. In many ways, life after prostate cancer is even better. I would not wish PCa on anyone, but I hope I can help folks to see that it is not the end of the world. It's pretty neat being a survivor!

I am now 4+ years post open surgery and my PSA is still "undetectable". Since I did not have nerve sparing surgery I am impotent, but trimix injections work very well for me. My wife and I are enjoying our "different" sex life. Occasionally, especially if I am tired, I will have a very small urine leak when I am just sitting and watching TV, etc. Annoying, but no big deal, really. I am otherwise healthy and enjoying my cancer free life.

Since my surgery was non-nerve sparing, there is no change in the ED department. Trimix injections still work great for those times when we want to have intercourse, but our sex life is much more varied, and pleasurable now. Incontinence is only an extremely occasional issue and may be as much a part of aging as a side effect from prostate surgery. If/when I do have "leaks", they are very small - just enough to be annoying - and usually happen when I am physically very tired. 5+ years after surgery our life is good and we glad to be sharing it.

Ken's e-mail address is: klillagore AT comcast.net (replace "AT" with "@")

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