My Story
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 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 five years ago. In that time, I have had PSA tests every three months (lately every six months) and repeat biopsies every two years or so. Basically, the PSA numbers have bounced around a little, with the most recent being 8.5 in June 2007. The lowest number recorded has been a 5, which was the first test done at both Johns Hopkins and Beth Israel. They apparently use a different system than the hospital where I scored an 8 initially. So my PSA has actually increased from about 5 to about 8 in five years. Not something to take lightly.
But the PSA test has an asterisk after it in my case. The ultrasound-guided biopsies also measure the size of the prostate gland. It turns out mine is about three times the average size. Since benign prostate tissue also churns out some PSA, it means my score is being exaggerated. It means only 1.2 of my 8.5 in the latest test is actually being caused by cancer. That sounds a lot better!
My most recent biopsies have shown two small spots of cancer, both confined to the gland. An endorectal MRI done in June confirmed what the biopsies have shown.
Oh, I recently ran into the oncologist who five years ago said that watchful waiting was not a good idea for me. He said that today he would probably have a different opinion on the matter.
Dr. Bubley, who has watched me closely and encouraged me over the years, told me recently that evidence is starting to accumulate to indicate that most Gleason 6 cancers need not be treated. The important thing is to make sure a 6 does not morph into a 7 over time. Only biopsies can determine that, so while the new prostate MRI may allow for fewer biopsies over time, it will not eliminate the need for them altogether. Too bad. They truly suck.
More recently, I was waiting for a plane at Logan Airport in Boston and found myself sitting near Dr. William Nelson, medical oncologist at the Brady Urological Institute at Johns Hopkins, another of the nation's leading prostate cancer experts. I introducted myself (I recognized him from seeing him at a couple of conferences) and told him my story. Among other things, he told me he had never heard of anyone dying from a Gleason 6 prostate cancer. More encouraging news.
So I continue to watch and wait. But beyond monitoring the status of my cancer, I try to actively work to retard the growth of my cancer, mostly through dietary choices. I take a ton of supplements (see separate list) and avoid meat and dairy products as much as possible (see separate stories.) So far, so good. I'll keep you posted on this web site.
PSA Update:
Oct. 2006 8.4
Jun 2007 8.5
Nov 2007 8.2
May 2008 7.2
