I was diagnosed with prostate cancer in the spring of 2003. I was 53 years old. As is the case with most men these days, my diagnosis came as the result of a PSA (Prostate Specific Antigen) blood test as part of my annual physical. My primary care doctor called me at home one night about a week after the blood draw and told me my PSA was high and that I ought to have the test done again as soon as possible to make sure the number — 8 — was accurate.
When he told me the news, I wasn't all that surprised. I was a medical writer and I knew that at least one in six men are diagnosed with prostate cancer over the course of their lifetimes. Also, my father had been diagnosed with the disease about 10 years earlier, although he was in his 70s at the time.
I had the test done again and the result was the same. A PSA of 8 usually is not a good sign. Anything over 4 is a red flag. So my primary care doctor said I should see a urologist for a biopsy to check for the presence of cancer in my prostate. I was friendly with a good one, and I went for the test. It isn't pleasant having 12 holes drilled into your prostate, but I got through it. The results, however, were not what I wanted to hear.
One of the 12 tissue samples had detected a "tiny focus" of cancer. The cancer was graded a "Gleason 6." Not the most aggressive, not the least. Somewhere in the middle, where most newly found prostate cancers fall today in the era of the PSA test and early detection.
My urologist, a friend whom I'd known for years and one of the top surgeons in the Boston area, recommended a radical prostatectomy. Although I had been a medical writer for daily newspapers for many years, I honestly didn't know as much about prostate cancer as I probably should have known. A friend had recently had the same operation and seemed to have come through it fine. My urologist said the operation would cure me. I started thinking about having it done.
At around the same time, Sen. John Kerry, who was running for president, had undergone the operation, but had chosen Dr. Patrick Walsh of Johns Hopkins Hospital in Baltimore to do the job. A lot was made of the fact that Kerry had chosen Walsh over the many surgeons available in the Boston area. It turned out that Walsh was considered the top urological surgeon in the country and had invented the so-called "nerve sparing" version of the operation which seeks to spare cutting the nerves needed to get and maintain an erection. I got Walsh's "Guide to Surviving Prostate Cancer", and read it from cover to cover.
My education also included going on the internet and reading everything I could find about prostate cancer and the various treatments, including radiation, both external beam in its various forms and seed implants, in their various forms. I also knew that some men — usually older men in their 70s and 80s — did not get treated at all, but chose to "watch and wait," holding off on treatment for as long as possible. The idea is that prostate cancer is usually slow-growing and that most older men would probably die of something else before their prostate cancer would get them. This was the case with my father.
Before long, I had called Walsh and made an appointment to get a consult with him. I flew to Baltimore. He told me that he would be happy to do the operation for me. I asked him if he could guarantee that I would still be able to get an erection afterwards, and he looked me in the eye and said: "No."
That scared me. I asked him what did he think about "watchful waiting" in my case. Walsh said it wouldn't be his first recommendation, but that it wouldn't be out of the question. I was glad to hear that. I started entertaining the idea of watchful waiting. At the same time, I had consults with experts in radiation therapy. The idea of seed implants had some appeal.
I was also friendly with a doctor who was an expert in sexual dysfunction. I talked to him about my situation. He told me point blank that whatever treatment I picked would leave me impotent. With surgery, the impotence would come on immediately and potency might or might not come back in time. In any case, Viagra or other ED drugs would be of no use. With radiation, impotence was slightly less likely and, if it did manifest itself, it would happen over time. This type of impotence responds better to ED drugs, he said.
My investigation then led me to a number of doctors who have written about prostate cancer treatment, including Dr. Jerome Groopman of Beth Israel Deaconess Medical Center in Boston, also a correspondent for The New Yorker. Groopman had written an extensive piece about prostate cancer treatment three years earlier. It was titled "The Prostate Paradox." The article evaluated the varying treatments without coming to a clear conclusion. But it did quote Dr. James Talcott of Massachusetts General Hospital as saying that the rates of impotence and incontinence associated with radical prostatectomy were much higher than generally thought. Talcott also said that more than three-quarters of patients didn't need treatment.
I continued with my investigation, using my medical writer contacts, calling both Groopman and Talcott. I asked Groopman what he would do if he were facing the choice i was facing. He said he probably would have a radical prostatectomy as it was considered the "Gold Standard" treatment. Talcott, on the other hand, seemed to be warning me off having the operation.
So I was at a standstill. I needed to find an oncologist who specialized in prostate cancer but was not a surgeon nor a radiation specialist. Maybe such a doctor could help guide me. I located two. One is the doctor who had consulted on my father's case a decade earlier. The other I didn't know but had heard good things about. My first question would be whether, at my age, it would be advisable to watch and wait. And, if so, would the doctor be willing to oversee my watching and waiting. And if watching and waiting was clearly not advisable, what treatment might be best for me.
My father, by the way, did receive a few hormone shots in the years subsequent to his diagnosis, but his prostate cancer never bothered him all that much. He died in 2007 of a heart attack suffered in surgery designed to repair a hip broken in a fall.
The medical oncologist who had consulted with my father all those years earlier told me that watchful waiting was not a good idea for me. He was not interested in overseeing me on such a course.
The second medical oncologist was Dr. Glen Bubley, director of genitourinary cancers at Beth Israel Deaconess Medical Center in Boston, the same hospital where Groopman works. He met with me and agreed that watchful waiting seemed to be an acceptable path for me, and agreed to follow me over time.
That was ten years ago. In that time I have had PSA tests every six months or so and repeat biopsies every two to three years. My PSA number has remained about the same (dropping in half while I was on Proscar or Avodart for a time) over the past several years. It is usually about 8 when not on one of those drugs and about 4 when on them since the drugs shrink the prostate. I was on the drugs for a few years but stopped in 2012.
My lowest score ever was a 5 and that was the first time I took the test. So it did go up from the starting point. Not something to take lightly.
But the PSA test has an asterisk in my case. The ultrasound-guided biopsies measure the size of the prostate and mine started out about three times the normal size. That means much of the PSA was being produced by the size of the gland (the gland produces some on its own even if there is no cancer) and not by the cancer itself. After going on Proscar and Avodart, the gland shrunk, so the PSA dropped too. Now, off of the drugs, the gland may grow again and the PSA will probably increase again.
My biopsies have never shown more than two positive cores taken, whether the test took 12 or 20 samples. A test in 2012 took only four samples and found one positive.
About six or so years into my watchful waiting experiment, I ran into the oncologist who initially said watchful waiting was not a good idea for me. This time, he said he probably was wrong. My urologist, who also recommended treatment initially, told me in 2012 that I had made the right decision to hold off treatment.
Dr. Bubley, who has watched me closely and encouraged me over the years, told me some years back that evidence is accumulating to show that Gleason 6 cancers rarely need treatment. An important thing is to make sure a 6 does not morph into a 7 over time. The only way to find out is by biopsy at this time. They are not pleasant.
Back some years go, when I was several years into watchful waiting, I was waiting for a plane at Logan Airport in Boston and found myself sitting next to Dr. William Nelson, medical oncologist at Brady Urological Institute at Johns Hopkins, one of the nation’s leading authorities on prostate cancer. I recognized him from seeing him at a couple of conferences. I told him my story. One of the things he said was that he had never heard of anybody dying of a Gleason 6 cancer. More encouraging news.
In December, 2008 my regular PSA test showed a significant jump to 11. That got me a little worried. I had another endorectal MRI which had shown the size of my prostate had jumped to 127 cc, from 96 cc the prior time I had the test. This was four times the size of a normal prostate. The gland had grown due to BPH (benign prostatic hyperplasia) not cancer, the test showed. So I went on Proscar for a while to shrink the size of the gland. Later, I switched to Avodart, a similar drug. My prostate shrunk to about 65 cc from those drugs. I went off them in 2012 due to concerns they could cause some cancers to become more aggressive. This is a controversial and highly debated subject.
So I continue to watch and wait. But beyond just monitoring the status of my cancer, I try to actively retard its growth, mostly through dietary choices. I take a bunch of supplements (see list) and avoid meat and dairy products as much as possible (see separate stories.)
Over the past 10 years, I have had endless PSA tests, probably four or five biopsies and three endorectal MRIs. As I read it, there has been pretty much no change in my condition. My PSA has remained at around 8 (down to 4 when I was on Proscar or Avodart, which cuts the size of the prostate in half and thus cuts the PSA number). None of my biopsies has shown any more than two cores positive. One of the cores of one of the biopsies three years ago was dubbed a Gleason 7 (which got me concerned) but it was deemed a 3+4 which is better than a 4+3. In any case, I had the slides reread by two national experts. One called it a Gleason 6, while the other deemed it a Gleason 7. So I’ll say its a borderline 7. In any case, my most recent biopsy was targeted to just four sticks in the area known by MRI to have cancer. Only one of the four was positive and it was deemed a Gleason 6.
So I will continue what I am doing. No treatment. Regular checkups. Fairly healthy diet. That's the first 10 years for me. Not worried at the moment.
So far, so good. I'll keep you posted on this web site.
Oct 2006 8.4
Jun 2007 8.5
Nov 2007 8.2
May 2008 7.2
Dec 2008 11.1
June 2009 9.5 (on Proscar since February)
Dec 2009 3.8 (on Avodart since June)
May 2010 3.8
Oct 2010 3.3
June 2011 3.3
June 2012 4.4
May 2013 12 (off Avodart)