Treated 2000 · Posted 2001
"This is an article I wrote, and one that was published twice in radiology trade magazines. The message was personal, yet I hope educational for readers and an attempt to get men to be checked and women to encourage those checks."
Where does one begin? I suppose at the beginning naturally. This is an article on the personal nature about Prostate Cancer and how a disease affects one, his family and co-workers. I am a healthcare worker / provider and have been for a long time (in the medical imaging field) and no, I’m not that old, I’m now 53. So, this event is particularly relevant to those that are close to medicine but also for those who are not. Over the years I’ve seen a lot of disease and as all healthcare people think, “I’ll never be affected with any of this, I’m immune to all diseases or, I’m too young”. Well, I’m here to tell you that it isn’t so, and, the older we grow the more chance you may see colleagues, friends or family members being affected with a serious illness.
While the picture may seem dismal, perhaps my telling you my personal story may spur more men to get a checkup or more women to urge their husbands or significant other to go for a checkup. Many men tend to put off their personal health checks and many of you know I’m speaking to you.
About a year and a half ago, during a routine physical and blood work, my PSA (prostate specific antigen) blood test came back elevated, about 9.7 (the lower the number, the better). My urologist suggested a biopsy to ascertain what was going on. I told him of some symptoms such as the feeling of slight pressure, more frequency of urination and just a different feeling at the location of the prostate. He said to come to the office and we’d check it out. With the exam (the infamous digital exam that men have to endure) he said all felt well, the prostate was small, smooth, etc. He obtained some fluid, which was placed under a microscope to see if there was an infection and there was. This is referred to as BPH (benign prostate hypertrophy). This is not uncommon for men to get as they get older. So, a course of antibiotics for a month was prescribed and of course a sample of blood at the end of the antibiotics was also ordered. The results of the blood work revealed a marked decrease of the PSA (to about 3.5-4.0). My Urologist then said we need to keep an eye on the blood level over time, if it remains stable then it should be OK.
I have to pause here to say that some physicians do not believe in the PSA blood test as they believe they are not specific enough. I once read that the PSA test is about 65% effective, that the test can show elevated results because of infection or prolonged irritation as well as an actual prostate issue. Let me sum it this way: If the PSA level is elevated at least you have information with which to check out what is going on. To not have the test simply because one physician doesn’t personally believe in the test is not an excuse as far as I’m concerned. Even if your insurance doesn’t cover such a test I would have gladly paid for it myself if early detection or a rule out cancer diagnosis were at stake. So again, I can’t emphasize enough the importance of regular checks.
For the next year and a half I had routine PSA tests about every 4 months when other blood tests were being performed for other reasons. The results were stable as mentioned before at 3.5-4.0 levels. All was well with the good ‘ol prostate. That was the case until last May when a repeat test was performed and the results came back a staggering 7.1. With that my Urologist recommended, once again, a biopsy which I consented to have done. It was performed on June 2nd, 2000. It wasn’t bad really because I didn’t feel a thing, some IV medication did the trick. It was over in a few minutes and the biopsy material sent to Pathology for interpretation. Post biopsy there was some bleeding as evidenced in the urine, a normal side effect of the procedure. I purposely had the biopsy done on a Friday so I could recuperate over a weekend and be back to work the following week. I had what appeared to be a complication and my Urologist wanted to see me on the following Monday to be sure I didn’t have an infection from the biopsy. When I went in on that Monday, a little hematuria was the least of my worries.
The unsettling, shocking, disbelieving news was delivered. I was told that 15 minutes before arriving in his office the Pathology results arrived via FAX and that I had adenocarcinoma of the prostate….. Cancer.
I was speechless, I couldn’t move. My Urologist said he did not expect this either, he expected that the results would reveal Hypertrophy or chronic inflammation / infection. He then told me of the options to take care of this explaining the staging of the disease, which in my case was low or early. He said my Gleason score ( a scoring methodology given by the Pathologist, the lower the better ) was 7. Of course, I heard some of this but not all of what he was saying. He gave me copies of the pathology report as well as literature to read about treatment(s) and others who had experienced this disease. Needless to say, I was more concerned about how to tell my family at this time.
I was in shock from the news and barely remember driving those 40 miles home. I arrived home safely and told my wife of the results. She thought I was kidding but the reality of the situation sunk in for both of us. My daughter, a cardiovascular nurse, cried. My son, a chef, didn’t really believe it and said to get it taken care of. He was more concerned than he led on, I could tell it in his voice. This disease and all diseases affect families and friends in different ways. Some deny it, some accept it, some get it fixed and some don’t. Over the next few days, I went through a rollercoaster of emotions. I was in denial at first then got mad, then accepted that I had this cancer and went into action. Needless to say I did not go back to work right away. I had to let the bleeding subside and I needed to be by myself with family without outside distractions. I stayed home for the rest of the week and made only a phone call to my boss to inform him of the news and that I would return the following week. That was hard enough to do, let alone face all my staff the next week. When I did return everyone was very concerned and compassionate. I made no bones about telling people, it wasn’t a big secret and it prompted many that I work with to get a PSA done including several physicians with whom I associate. I became the local expert on the subject and lots of questions came my way. I always answered candidly.
There are several options for the treatment of Prostate cancer some of which are Gleason and staging score driven and perhaps age driven. First, there is the do nothing approach. I didn’t feel that to be an option at my age and rejected it outright. In my case I figured I had lots more time on this earth and needed to act as fast as I possibly could (my Urologist and Pathologist said I had time to adequately research the subject and make an informed decision). I read all there is to read, I searched the Internet, I spoke with Radiation Oncologists, and Hematologists, Surgeons, Pathologists and Urologists and I spoke with others that had already been treated in one way or another. I became informed with all the research and the vast amount of materials available from physicians, the library, medical libraries, friends and colleagues and the Internet. I got all I could.
As I did my research, I soon learned the second choice was a procedure called HDR (high dose radiation). This is a procedure that is invasive whereby the patient has catheters ( almost straw like materials ) placed into the prostate under the guidance of a Radiation Oncologist precisely in various regions or locations in the prostate. CT scanning affirms the locations according to the Radiation Oncologists treatment planning usually done with 3D conformal treatment planning computers. Then the patient is treated with high source or dose radiation in the form of solid radioactive materials for a prescribed time in each of the many catheters to destroy cancer cells. The sources are inserted and removed on more than one occasion to receive the prescribed total dose, which is patient specific. The procedure is done more than once because the patient cannot receive the total dose all at once and the catheters are not removed between each treatment. Usually the patient remains in the hospital for a couple of days.
Another option was that of radioactive seed implants. As with HDR the Radiation Oncologist has a computerized treatment plan, CT scans and other information with which to plan and perform the procedure. In this procedure there are permanent implants made into the prostate where radioactive seeds are implanted. There are many such implants in one’s prostate. The seeds emit radiation that kills the cancer. The type of radioactive seeds used emit radiation for a specified period of time. The type of seeds have a half life, that is, ½ of the radiation potential is used up within a specified period of time dependent upon the source used. One person I spoke with told me that the half life of the seeds that were implanted in him was 8 weeks, that is, the maximum dose was delivered to his prostate in 8 weeks and it tapers off from there.
The fourth type of treatment was the so-called “gold standard”, the radical prostectomy, surgery to remove the prostate gland. This of course is also an invasive procedure and sometimes not without post surgical issues. There is the catheter that one has to have in for 2 weeks or more in some cases (for drainage of urine), the possibility of incontinence, impotence and the recovery period of the procedure itself. I considered having surgery myself even in light of the post procedure issues. All the procedures listed have some recovery time but they are all different and may have varying degrees of severity if any at all. You just have to investigate and weigh all the possibilities and risks, become the expert and well informed.
The final treatment option was Proton Radiation Therapy (as opposed to conventional external beam Radiation Therapy using photons). Protons and Photons differ in the energy level and the type of energy itself. 3D conformal external beam Radiation Therapy has had many success stories and sometimes is used exclusively as treatment or in combination with the surgical removal of the prostate. This isn’t too common but does apply.
I chose the Proton Radiation as my treatment for many reasons. First, the statistics were great with a greater than 95% success rate. That was as good as surgery and as good as the other treatment options that I researched. In some cases the success was 98% depending on the staging factors, the Gleason score, how much of the prostate was affected, the location etc. Second, it was not invasive, a major advantage over surgery. Regular external beam radiation covered the pelvic area as where Proton therapy was conformal to the prostate and less of the surrounding area and, the side effects may be less. There are side effects that can come with all forms of treatments, you just have to read about them and factor them into your decision process. Last, I thought about the invasiveness of all the treatment options and thought that Protons were the least invasive and had the least side effects for my situation. It may and would vary according to each individual.
So, the decision was made and I embarked on a consultation with the Radiation Oncologist to determine if I was a candidate for this type of treatment. I traveled to the closest Medical Center, which offers Proton therapy, to Loma Linda University Medical Center in Loma Linda, California (near San Bernardino) for a consult. I was a candidate for Proton therapy alone (some patients have some Proton and some Photon or conventional radiation, it depends on the individuals circumstances). So what was next? I was anxious to get started on the 2 months of treatments and kill this cancer that was in my body, the sooner the better.
I came back the Medical Center about 2 weeks from the initial consultation for a CT scan and for the making of my pod, a device that ensures my position is consistently correct for treatments. The pod is a half pipe (heavy plastic) that one lies in and a chemical substance is poured under you (you are lying on plastic sheeting material so the chemicals do not contact you), between your legs and on the sides. The chemical is similar to that used to seal window frames or doors. When poured it expands and conforms to your body and contours. I actually had the pod and conforming material done just prior to the CT scan where I was scanned in my pod for purposes of planning my treatments. Once the CT scan was completed that was it for me that day. I just had to wait for the start date.
In the meantime, however, the work of the Radiation Medicine Department had just begun. First, all the CT data was automatically sent to the treatment planning computer for purposes of planning my specific treatments, doses, angles and for planning my full course of treatments. In addition, blocks were made specific to my body, my anatomy. The blocks are devices that block or limit radiation to certain areas in my body while allowing maximum radiation to the prostate area and surrounding tissue. To see the blocks is amazing. The physicist(s) and the Radiation Oncologist approve the radiation planning. That process took about 2-3 weeks to finish.
In the interim period of waiting to schedule actual treatment I did other things that needed to be done anyway, but, as most people do, previously procrastinated before proceeding. It took this diagnosis to prompt me into action. I’m referencing preparing a will or in my case our living trust and making sure all papers and affairs were in order and family knew all the details. I already had all my affairs in good order, in the computer, backed up, but my old will wouldn’t cut it in today’s world. We had a living trust prepared and recorded. By the time I began treatment in southern California I was in good shape as far as family preparation, trusts and obligations was concerned. Emotionally I was OK but concerned about many things; family, work, outcomes, and what was I going to do for 2 months.
I stayed in an apartment for the 8 weeks of treatments and it was comfortable, close to the Medical Center and close to some friends that I’ve know for years. They were great and a diversion to the treatments. I went home every 2 weeks for a break and to do things that needed to be done at home. Treatments progressed well with little interruption. The staff and physicians in Radiation Medicine were terrific and supportive, as were my friends in town. Treatments took approximately 10-20 minutes each day. This involved getting into the pod, and having some digital x-rays taken to determine exact treatment position each day. All was computer checked to avoid any mistakes. So, with that amount of time each day for treatment ( treatments were 5 days / week ) I had time to read, use the laptop and rest. I found myself bored and tried to keep occupied as best I could and really missed my family, friends and colleagues. In any event, the treatment course of 8 weeks went well, long but well and I met many interesting people from different countries ( Loma Linda University Medical Center was the only clinical proton therapy facility in the world at that time ). We compared notes, met each day, talked and became friends. There is a camaraderie that takes place sometimes when people meet under these circumstances. I believe this friendship is because each person knows how the other one feels, what they have endured, gone through, the emotions, etc.
I finished treatment in mid October of last year, returned home and planned to go right back to work. I was wrong! I was pretty tired from the radiation and from lack of activity. So, I remained off for awhile, gained strength and returned to work. Soon I was back to the normal hectic pace that one finds in a Medical Center setting.
Now, 4 months post treatment and 6 months from the onset of treatment, I was scheduled to have my first checkup. I had the PSA test done and the results were great! As you recall my initial PSA at the beginning of treatment was 5.69. The new result was 2.02. The Radiation Oncologist had told me they like to see the PSA level drop in about ½ in 6 months and to 1.0 or lower at a year. My first test confirmed I was on track and I was pleased with the results. My Urologist did the digital exam and that was as he suspected as well, still small, round but flatter due to the radiation. All was going fine and I continue to gain more strength and I am basically back to normal awaiting my time for my next PSA and exam in August.
This whole experience has fundamentally changed how I look at life in general. Things that were more important before are not as important, such as every detail of my car being perfect or working 12-hour days or not mowing the lawn each week. Now I work a normal amount relative to what needs to be accomplished, spend lots more time with my wife and don’t worry about things that used to bother me. I try to enjoy each day.
I hope this article enlightens men to take care of themselves and shares important information to those that need information or to those that can then give information to the stubborn. While I am just one person of many with this type of story, I just wanted to tell it to a wider audience. If my sharing my experience encourages others to get a checkup, it has been worthwhile. In the meantime live life to the fullest extent you can, appreciate those around you, family, friends and colleagues and above all else take care of yourself.