Ben Hunter, 64 years old, works as a film writer and director and is actively involved in various philanthropies. Ten years ago, he was much like any other man in his mid-50s: He was married with children, felt generally healthy, and had no real urinary difficulties. He tried to exercise when he could and ate a typical American diet.
In 1996, Ben’s internist felt something during a digital rectal exam that she described as an “anomaly” — not entirely normal, but not suggestive of cancer, either. She recommended a PSA test, which revealed that Ben’s PSA was 5.7. Ben subsequently underwent a prostate biopsy. One of the cores removed during the biopsy contained cancer. The Gleason score was 3+3. Ben underwent a bone scan and a computed tomography scan, but there was no evidence of metastases.
Ben sought advice from several doctors and did a great deal of research on his own. Almost every physician Ben consulted with suggested that he undergo traditional treatment with either a radical prostatectomy or some form of radiation therapy. After giving the matter much thought and doing extensive research, Ben instead decided on a strategy of active surveillance. In this interview, he explains why.
Editor’s note: To maintain his privacy, Ben’s name has been changed. All other details are as reported. |
What type of research did you do, as you evaluated treatment options? And what information most affected your decision?
I started to gather information and seek out other opinions about what I should do. I consulted with at least three physicians. What amazed me was that there were many choices, but no clear indication of which was best. I could choose from radical prostatectomy, traditional radiation, radioactive seeds, freezing the prostate, burning the prostate — there were all these different options. The doctors presented the pros and cons of each one and recommended that I think about it carefully and then decide what I wanted to do.
I started to hear anecdotes about other men in my position. I heard about one acquaintance who had surgery for prostate cancer, suffered adverse consequences, and then his cancer had come back. So that made me wonder how effective the treatments were. Those anecdotal pieces of evidence were very profound, because you’d think, “Wow, what if that happened to me? That would be a terrible outcome.” So I decided to really research and think things through carefully before doing anything.
It sounds as if the side effects of treatment were most bothersome to you, and might have had the most impact on your decision. Is that accurate?
I know some men with prostate cancer think, “Do whatever it takes to cure me of this disease.” For me, it was more a matter of weighing the risks and benefits.
At the time, what most hit me were the side effects of treatment. The doctors told me that with surgery there was a 30% chance of impotence, and maybe a 5% chance of incontinence. That’s a pretty stunning thing to hear, when you consider yourself in the prime of life and healthy. But radiation wasn’t any better. It had similar complications, with slightly different percentages, but it might also cause rectal damage. So I continued to research the various options and compare the numbers.
It became clear that the various treatments had slightly different side effect profiles, but not meaningfully different. So then it became a question of, if I’m going to face these side effects, what are the chances that a treatment will actually improve my health or my longevity? And what I found out was that there was no information that proved that any of these treatments would actually lengthen my life. So that really struck me. It was all risk and no guarantee of benefit.
You’ve made some significant lifestyle changes. Can you talk about why you thought this was so important?
From my research, I knew that in Japan, prostate cancer was very rare. I came across an autopsy study comparing men who died in auto accidents in either Japan or the United States. It found that the number of precancerous prostate lesions was about the same in both groups. And yet the prevalence of prostate tumors is much higher in America than it is in Japan. But when Japanese men move to America, after a generation or two, their prostate cancer rates are the same as American men. So this led me to hypothesize that prostate cancer is a lifestyle disease.
| Prostate cancer risk varies by country Various studies indicate that by age 60, American men are more likely to develop clinically detectable prostate tumors than are Japanese men, even though autopsy studies indicate that until age 50, microscopic prostate cancer cells are found in a similar percentage of American and Japanese men. Source: Journal of Urology, April 1990. |
I did some reading, and I went on the Internet and saw what people were posting in online support groups. I accumulated information slowly. In the end, I made about 50 lifestyle changes in response to having cancer.
What dietary changes did you make?
I am now a vegetarian. I eat a lot of fruits and vegetables. I try to eat food that is as close to the source as possible, such as whole grains. First I followed a macrobiotic diet. But then I modified that diet as I read about additional studies. For instance, one study came out of Harvard about the benefit of eating cooked tomatoes, which reduces the risk of prostate cancer. So now I eat seven to 10 servings of cooked tomatoes per week in foods like spaghetti sauce and so on. For the past decade I have not eaten any kind of animal meat whatsoever. But I usually eat fish twice a week, for the omega-3 fats, which laboratory studies have shown may slow tumor growth. Each day, I drink one glass of red wine and have at least three cups of green tea — for the antioxidants, which limit cell damage.
I don’t eat dairy products or eggs. I’ve had almost no refined sugar in the past decade — not one single piece of cake or pie, not one doughnut, not one cupcake. For the past five years, I’ve had about one oatmeal raisin cookie a month, as an occasional indulgence.
One good thing about this diet: I’ve lost at least 10 pounds. And that’s important because I learned early on that keeping my weight down might protect against the development and progression of cancer.
What other sorts of changes have you made in your lifestyle?
I work on stress reduction. I now do yoga and go for massage therapy. I exercise about four times a week. And I try to take time to “smell the flowers,” as they say, and take walks in the woods.
I also take a COX-2 inhibitor, Celebrex, every day, because it may be helpful in keeping the cancer at bay.
And I take quite a few supplements every day, based on what I’ve studied on the Internet and in books. For example, I take B-complex vitamins and saw palmetto. In 1999, I went to a doctor who specializes in integrative medicine, who’s helped me modify some of the things that I take.
How often do you monitor your PSA levels? And what other evaluations do you undergo to make sure the cancer is not advancing?
I get my PSA tested every three or four months. I see my oncologist about once every nine or 10 months and occasionally have some tests to see if there’s any indication of spread. I’ve decided to avoid prostate biopsies for a couple of reasons. First of all, they hurt. Second of all, I believe the biopsies have risks. And third, there’s no information that I would receive from a biopsy that would cause me to do anything differently.
It’s not particularly nerve-racking to engage in active surveillance. I like to try to keep track of what’s going on. One of the reasons I like PSA tests is that if my PSA goes up, it tends to reinforce the degree of persistence I have in doing my program. Sometimes I am not as diligent as I should be. So I use the PSA as a kind of wake-up call
Perspectives on Prostate Disease, a 48-page quarterly prostate journal, combines expert prostate cancer news and commentary, relevant clinical findings, updates on important new prostate cancer research, and personal case histories to help you fully understand the important considerations in the diagnosis, treatment and outcomes of disorders of the prostate.
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Comments: 3
Is your article meant solely for members of the medical profession? I ask because most members of the group I'm in are Harvard doctors. Their articles, while giving the requisite info, are easier to comprehend. Perhaps it's because they are more experienced in writing for lay people.
A couple of questions: What is a Gleason score? Number-wise, 3+3 means? Tomography scans? Please define 'core' pertaining to the article?
Thank you.