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PROSTATE CANCER SUPPORT SITE

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MP lives in Netherlands. He was 46 when he was diagnosed in September, 2008. His initial PSA was 4.81 ng/ml, his Gleason Score was 7 (3+4) and he was staged T1c. His choice of treatment was Proton Beam Therapy. Here is his story.

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 of 3 ½ months 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. *1*

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.*2

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. *3 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!

 

UPDATED

June 2009

 

 

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

 

UPDATED

October 2009

 

 

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.

MP's e-mail address is: pitneynl@versatel.nl

NOTE 1: 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. [back]

NOTE 2: There is considerable variance in the amount of bleeding associated with biopsy and the length of time this can continue. [back]

NOTE 3: 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.[back]