THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

In April of this year I had an annual physical for the Navy reserves. I have been in the Navy and Navy reserves for over 22 years and am quite use to the yearly ritual of being poked and prodded by Navy's finest corpsmen and surgeons. Each year the results are the same, always a clean bill of health.

So there was no reason I shouldn't have been optimistic the results would be the same again this year. I'm 46 years old and in pretty good shape. Heck, I was even in training to run my first marathon!

I thought nothing more of my physical, so it was a surprise when I returned from a business trip two months later in June to find an email waiting for me from the flight surgeon who performed the physical. He felt it important for me to know my blood test from the physical came back with an elevated PSA of 4.6.

"P....S....what?" I thought. Then I remembered I had eaten breakfast the day of the physical. A corpsman told me that might affect my cholesterol test. I reasoned that must be what it was: high cholesterol. Fortunately, the little voice inside convinced me I should look it up - just to be on the safe side.

When the results of my Google search on the internet for "PSA" came back 0.28 seconds later I felt like Alice must have when she fell through the looking glass!

So my strange journey began ....

I had vaguely heard of prostate cancer, but all I knew about it was it was something I needed to start being concerned about when I got older. To the best of my knowledge no one in my family has ever had it. It was something someone else got. I know more than I ever cared to about it now!

Next I scheduled a visit to an urologist in July for the obligatory DRE, and a second PSA. DRE was clean, but the PSA was 4.3. The doc prescribed two weeks of Cipro to rule out infection with a follow-up PSA in four weeks.

I used the intervening time to learn about PCa. Over time I became fairly realistic (pessimistic?) about my potential diagnosis. I have never had any symptoms or problems with that part of my anatomy, so that would likely rule out any infections or other prostate problems. My PSA is high for my age, and the urologist said my prostate was a normal size. In my mind the only logical answer was cancer.

Four weeks later my PSA was 4.81. My fears confirmed. Time for a biopsy.

Let me take a moment to talk about my PSA tests. My PSA results were 4.6 in April, 4.3 in early July and 4.81 in late July. Three very different results taken over a span ofthree and a halfmonths by three different labs on two different continents. Based on this I'm of the belief that the results of a PSA test can vary greatly by (1) time, (2) the lab performing your results, or (3) some other external influences. In other words, I don't look at PSA results as being an exact science. [MP is quite correct here, on two counts. In the first place PSA is an inexact test and no laboratory can guarantee more than 80% accuracy, let alone give a reading to two decimal places and secondly the different manufacturers use different methods to calculate the PSA so they are not directly comparable. Oh! and PSA is NOT prostate cancer specific anyway. Anyone interested in reading about the basics of PSA might find it useful to go to PSA 101.]

I'm an American, but I live and work in the Netherlands. Whenever I can I try to receive all my medical care in the US. On my next trip to the States in September 2008 I arranged the biopsy. If you're new to the forum you may have read from others about the unique joys associated with receiving a biopsy. Mine was not too much different from the others described elsewhere, but since undergoing the biopsy I'd like to share some information and tips I learned for anyone reading this that has yet to have a biopsy:

Ask for a minimum of 12 samples, with a better number being 20. Hey, while they're up there they might as well take as many cores as they can! My biggest fear before the biopsy was that if they missed the cancer I would have to undergo one or more additional biopsy(s) in the future. If I had cancer I wanted my urologist to find the stuff the first time around.

Ensure there are two people performing the biopsy. One taking the samples and the 2nd labeling. Saves time.

Ensure they give you some kind of pain killer.

I wasn't ready for the after-effects of the biopsy. They told me about blood in the urine, stool and semen beforehand, but I guess wasn't quite prepared for it, or didn't listen completely. I never had blood in my urine. I only had a few drops in my stool in the hours after the biopsy. The shocker for me was the blood in my semen. I was expecting some flecks or streaking. But I was alarmed to see that which is normally white turned a bright red. When asked, my urologist told me it was nothing to worry about. "Think of it like food coloring," he said. It took about 6 weeks before the color gradually returned to normal. [There is considerable variance in the amount of bleeding associated with biopsy and the length of time this can continue.]

And the results? Three of 12 cores came back positive, Gleason 3+4, staging T1c.

A few days after the biopsy the doctor called me back into his office to give me the news. Since I had already done some research I thought I already knew of the options available. He mentioned surgery and radiation, saying that at my age and stage those would probably be best (and to his credit he didn't refer to me as a "Poster Child"). Finally he gave me a booklet to read and his email address to contact him if I had any questions. I walked out to the parking lot and got into my rental car. Before driving off I took a couple minutes to wallow in self pity and shed a few tears, then I called my wife in Holland.

My urologist seems competent, but he never gave me a good, confident feeling, so I had already resolved that whatever treatment I was going to have it wasn't going to be with him. I suppose one of the good things of being an expat is that I can run away home across the ocean and isolate myself without having to make any arrangements with doctors until I'm damn good and ready - and until the airfares are cheap. So in the interim I been doing research on options, or modalities (I hate that word).

And one of the results of my research so far is that I'm not convinced the cure isn't worse than the disease!

One of the other frustrations I have felt in recent weeks is the lack of opportunity to learn more about how this disease affects men near my own age. Being relatively young at the time of diagnosis presents some challenges that I don't believe many older gentlemen have to deal with, such as how - or even if - to tell young children about your diagnosis. And in my case any treatment I undertake I will most likely do it alone in the US because my wife will be at home in Holland working and caring for the children.

Even before my diagnosis I was of the opinion that surgery was not going to be the right choice for me. I know that many men make it through the procedure just fine, but being fairly young I did not want to think of having to live the second half of my life with some of the side-effects of surgery if I happen to come out on the wrong side of the statistics. So with that in mind I set about looking at other options.

I had considered Active Surveillance for a while. Overall I am OK with the idea. I agree with some who say this disease is over-diagnosed and over-treated. What it ultimately boiled down to for me is my age and my family. I have two young children living at home and with any luck I may still have another 30 or 40 good years left in me. [Whilst understanding MP's dilemma of trying to forecast an event 30 or 40 years hence, it is worth knowing that half the deaths from prostate cancer in the US occcur in men older than 83 years of age and more than 90% of deaths occur in men over the age of 70. A man of MP's age with a diagnosis like his would be unlucky not to live at least 30 years. See also The Elephant In The Room.] I don't know if I could - in good conscious towards my family - undertake an Active Surveillance regime for that long. I've decided it's better to take care of the cancer now rather than to live with the thought of it in my body for the next four decades.

I had looked at HIFU and was seriously considering that soon after my diagnosis. Because I live in Holland it is a fairly easy drive into Germany to obtain HIFU treatment.

During my research I came across Proton Beam Therapy, which is the option I plan to pursue. Initially I did not even consider it, as I had grouped it in with all the other radiation treatments, which I had already dismissed. But a colleague pointed it out to me and explained the differences between proton and other external radiation treatments, and because of that I will forever be in their debt. I am currently scheduled for a consult at the Loma Linda University Medical Center in early February 2009, and if all goes well I will start my course of treatment in March 2009. At Loma Linda they have assigned me to meet with a doctor whom I have since learned is also in the Navy reserve. As it was a Navy surgeon who started me on this path, it's only fitting another should see me through to the end!

Thanks to websites like YANA I have been able to learn so much about this disease and the many options for treatment. This is truly a fantastic resource! I have nothing but praise for Terry and everyone else who has contributed to this web site. I also want to thank Michael S., another YANA Mentor who has shared some of his thoughts with me by e-mail. I feel like I am right behind him on every step of my journey so far.

And what about the marathon? I finished the Cologne (Koln), Germany, Marathon on October 5, 2008. Exactly 20 days after learning I have Prostate Cancer. It was my first marathon, and will most likely the only marathon I will run. And one of the things that pulled me through that race was the thought that I have cancer and that it was not going to keep me from finishing that race. Nor, for that matter, will it keep me from doing anything else I choose to do in my life!

I finished my last Proton Therapy treatment at Loma Linda on May 4, 2009. Many others have described their experiences and the level of care received at LLUMC in their writings on this site, so I won't waste the reader's time by echoing their comments, just to say that everything good said about the professionals at that institution is completely true. It was a great experience.

The 45 treatments I had were a breeze. I managed to get one of the coveted morning slots early in my treatment so I was finished in most cases by 7:40 in the morning. In and out in less than 45 minutes. This left me plenty of time for work and other activities.

The only minor problem I had was with urgency and hesitation which started about three weeks into treatment and persisted until about four weeks after. These effects were minimal and easily corrected with a course of Flowmax. Six weeks after treatment everything is back to normal and all systems are working as they should. Even the red sunburn marks on my hips have faded. No lingering side-effects at all. It was like I was never there. One more satisfied customer!

My first post-treatment PSA will be in September, then every 6 months afterward. I hope for a good drop in PSA then. Interestingly, my PSA on the day I had my initial consult visit in February '09 was 3.18. This is almost a full 1.6 points below my highest PSA in August '08. Simply more proof of how much a person's PSA can vary by day and testing lab.

I will update after I receive my PSA results in September.

Cheers

MP

I had two seperate follow-up PSA tests within three weeks of each other this summer with vastly different results, so I'll admit that I'm a little disappointed. I'll try to explain:

In early August - three months post-treatment - I had an annual physical for the Navy and my PSA was 3.01. If you've read my story you'll know my Navy phyical exam in 2008 started me on this journey with a PSA of 4.6, so that is a 1.5 point drop post treatment. That's good, right?

But wait, it gets stranger...

I had my first "official" four month post-treatment PSA from a Dutch lab about three weeks after my Navy exam in early September. The results were 4.0. That's not good. This was the lab that gave me a 4.8 a year prior. I did go for a recreational bike ride with my daughter the day prior, so that certainly could have had an effect.

Both results show a drop, so things are moving in the right direction. The doctors at LLMC told me to expect about a 30% drop at my first PSA test, so I was hoping for something in the 2.0 to 3.0 range.

My plan is to wait this out until my next test in March. I'm not overly concerned, just a little disappointed that the numbers were not as low as I had hoped they would be.

Otherwise I have absolutely no complaints. The urgency I had during treatement is a faded memory, and everything else works just as it did before treatment so I am still extremely pleased with my choice of Proton. I'll update in another six months.

I wanted to update my story in March, telling all how my PSA had dropped, how everything was working normally, etc., etc., etc. But in March at my 9 month post-treatment exam my PSA was still elevated at 4.3. I should have expected a PSA below 2.0 at this point in my recovery from Proton treatment.

Concerned, I called Loma Linda and they told me to wait another 3 months and have a new PSA draw, and to be sure to stay off my bicycle and to rest my prostate a week prior to the test. I had another test in May and the results were 4.1. Another call to Loma Linda and they prescribed a 30 day course of Celebrex to rule out any inflammation. Last week after finishing the Celebrex I returned to my doctor only to learn my PSA was now 4.2. Nothing significant on the DRE, although he thought it felt "somewhat firm".

This is at 15 months post-treatment. I contacted Loma Linda again and the nurse wanted to speak with Dr. Rossi, who is out on vacation, before advising me further. I'm trying to make sense of it all right now. She told me I should probably plan to have another biopsy (Oh joy!). This time with 12 - 20 cores. And possibly a bone scan.

The options for follow-on treatment - if necessary - are cryotherapy or hormones, neither of which I'm thrilled about. Of course a third option which wasn't mentioned is Active Survellience.

The irony is I feel great! I've been working out regularly. Eating much better. Í recently dropped 15 pounds and I am in the best shape I've been in years. I never have had any symptoms to indicate I have PCa, other that high PSAs and a biopsy. No aches or pains. All of my male equipment operates just as it always has without any problems. I suppose the good thing is my PSA is not climbing either, just rock steady around the 4.1 - 4.3 level.

All I can believe is I must have a really tough prostate to withstand all that radiation! I envision in the days following a nuclear holocaust once the mushroom clouds clear all that will be left crawling out of the ashes will be the cockroaches and my prostate! (A little gallows humor) [MP isn't the first to compare prostate cancer cells to cockroaches - Mac penned his Cockroach Analogy some years back!].

In response to a reminder, MP said:

I keep meaning to send you an update, but have been too busy. I would be happy to answer questions for other men. And I promise a story update very soon. Fortunately all has been good for me so far.

It has been almost exactly four years since I started treatment at LLUMC. I have meant to update my story before now, but as with many of the best intentions life often seems to have a way of making other plans for you.

The last time I updated this I was concerned about treatment failure. I'm happy to report that my PSA has subsequently dropped to what I would consider to be my nadir, although I think it is probably a little higher than most men's. It has stabilized between 1.7 and 2.0, which is on the high side but still within the normal range. Since my last update in August 2010 I underwent a course of Celebrex and a series of monthly PSA/DRE checks. My PSA has slowly dropped over the following 12 months to its current level, and have been at this point since late 2011.

The good news is that for me all is good. Probably one of the reasons it has taken me so long to provide an update is that I hardly ever think about PCa anymore. I have no signs, symptoms or side-effects of the disease or the treatment. All of my male parts operate just as they were designed to. My sex life is strong, happy and healthy, and I absolutely no urinary problems.

I have always believed that the choice a man makes for how he treats his PCa as a highly personal decision and I would never criticize anyone for the treatment path they choose. If you are someone who has just been diagnosed and are bewildered by the options available I know it can be overwhelming. As you read these experiences on this web page you will learn that many men have different experiences with the disease and the treatment, both good and bad. One question that helped to guide me towards proton treatment was to actively look for any stories anywhere of men who were dissatisfied with proton treatment as a choice. At that point in my research I could find none. Although I'm sure some negative stories must exist - somewhere - but good luck finding them. The fact is that the overwhelming majority of men who have had proton report positive experiences and results, which is what sold the treatment to me.

For now I think of this as a dark chapter in my life that is slowly disappearing in my rear view mirror as I motor on down the road of living. I rarely visit this site anymore because I hardly ever think of PCa except for my semi-annual PSA/DRE checks. That being said, I am very grateful to Terry and to the hundreds of other men who have contributed to this site as it was the main source of information and inspiration to me as I was undergoing diagnosis and treatment. Many thanks to all!

In all likelihood this will be my last update on this site unless something changes as I hope I won't have anything more interesting to report. [I hope this is not the case. This is an example of the best kind of update - nothing to report except getting on with life. That is what newly diagnosed men want to hear - and the longer updates are made the better they feel.] Even though I will be drifting away as a correspondent I will still be happy to answer any questions that anyone has about my choice, treatment or current health.

Best of luck to all of you.

I wanted to provide a brief update on my progress. My most recent PSA was two weeks ago at 1.65. As I mentioned before, it has been holding steady around this point so I am not concerned and have come to the conclusion that this is my nadir. I will have one more bi-annual check in February 2014 then I will go to annual PSA/DRE checks as per the recommendation of my radiologist after that.

I still have no complaints or concerns. Everything functions as it should and so far I am very pleased with my choice of treatments and my outcome. My PCa journey seems like a distant memory now.

Another six months have passed and it was time for another PSA/DRE. This time again no-news-is-good-news! My PSA has stabilized at around 1.6 and the DRE was normal. I'm absolutely sure of the latter as the doc gave me what was probably the longest and most thorough probing my prostate has ever had. I now better understand the expression "when seconds turn into hours"!

Everything working as it should with absolutly no problems. I'm still a happy man!

Another year has gone by and I am still happy with my treatment and results. Everything working as it should. My PSA continues its slow decline and I hardly even think of my cancer or the treatment anymore.

I was terribly saddened to hear of Terry's passing last summer. Although I never met the man we did exchange a few notes in the dark days after I received my initial diagnosis. It was his words to me and the wisdom behind those words that helped me to choose Proton treatment almost 7 years ago from dizzying array of other treatment options for PCa. For that gift I am very grateful to him, as I am to all the men who have contributed to this site.

M's e-mail address is: mpp1 AT ymail.com (replace "AT" with "@")

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