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BRONZE

Ken Lillagore and Gay live in Colorado U.S.A.. He was 60 when he was diagnosed in November 2008. His initial PSA was 4.3 ng/ml, his Gleason Score was 3+4=7 and he was staged T1c. His choice of treatment was Open Surgery - RP (Radical Prostatectomy). Here is his story.

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!

 

UPDATED

March 2011

 

 

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.!

Ken's e-mail address is: klillagore@comcast.net