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A patient’s story: Why one man opted for lifestyle changes instead of treatment

Posted By Harvard Prostate Knowledge On November 10, 2009 @ 4:29 am In Cancer,Living With Prostate Cancer,Patient Perspectives,Prostate Health,Prostate Knowledge,Treatments | Comments Disabled

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.

After spending two years in California, where he was working on a film, Ben returned to his home on the East Coast in 1996. He contacted his doctor to schedule a routine physical exam. But his routine was about to be disrupted.

While doing a digital rectal exam, Ben’s internist felt something on his prostate gland 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 ng/ml. 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.

*Note: To maintain his privacy, Ben’s name has been changed. All other details are as reported.

Can you share some of the emotions and thoughts you had while dealing with your diagnosis?

You know, before I had prostate cancer I didn’t even know I had a prostate gland. So I went from a base of not even knowing that this gland existed to finding out I had cancer in it. At first, I was fearful. I couldn’t sleep at night. I was worried about the future.

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.

Nobody rushed me. The doctors all said this was a slow-growing cancer and that I could take a month or two to investigate and decide which way to go. But nobody suggested the option of active surveillance. At the time, that type of strategy was normally reserved for people who were a lot older than I was, or people who had some other serious medical condition that would make treatment too risky.

As it happens, my wife does occasional research about medical conditions for friends. So she helped me do research on the Internet as well as in books, to learn more about the disease so that I could try to make a treatment decision.

And what bothered me was that, literally in the first month that I was thinking about this, 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 [see Figure 1]. 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.

Figure 1. 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.

This raised the possibility that if I could change my lifestyle, then perhaps I could combat the disease. An important part of my thinking was the fact that all the doctors I talked to agreed that prostate cancer, for most men, is a slow-growing disease. So I saw lifestyle change as a two-prong strategy: It might inhibit new tumors from emerging, while slowing the growth of existing tumors.

The slow-growing nature of these tumors also meant that there was always the chance that I would die from another disease or accident without facing the terrible side effects from prostate cancer treatment. And new medical or nonmedical treatments might emerge, such as a cancer vaccine. So in some ways I decided to play for time.

The final piece in my decision-making process was that I had an alternative: making lifestyle changes. 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 [see “Macrobiotic diet,” below]. 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 [see “Tomatoes and prostate cancer risk,” below]. 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.

Tomatoes and prostate cancer risk

A number of studies have concluded that eating tomatoes may reduce risk of prostate cancer. It remains unclear whether lycopene or some other nutrient in tomatoes is responsible.

Sources: Kristal AR. Vitamin A, Retinoids, and Carotenoids as Chemopreventive Agents for Prostate Cancer. Journal of Urology 2004;171:S54–8. PMID: 14713755.

Miller EC, Giovannucci E, Erdman JW, et al. Tomato Products, Lycopene, and Prostate Cancer Risk. Urology Clinics of North America 2002;29:83–93. PMID: 12109359.

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.

Macrobiotic diet

As much a philosophy as a diet, macrobiotic eating emphasizes organically grown fruits, vegetables, and whole grains, as well as food choices that contribute to health and internal balance.

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 [see “COX-2 inhibitors”].

COX-2 inhibitors

Evidence suggests that regular use of NSAIDs and COX-2 inhibitors may reduce the risk of developing prostate cancer. But more research is necessary before doctors will be ready to recommend this strategy. It’s also important to remember that regular use of NSAIDs and COX-2 inhibitors has been linked to cardiovascular and kidney problems, so weigh all the health benefits and risks.

Source: Basler JW and Piazza GA. Nonsteroidal Anti-Inflammatory Drugs and Cyclooxygenase-2 Selective Inhibitors for Prostate Cancer Chemoprevention. Journal of Urology 2004;171:S59–62. PMID: 14713756.

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.

At one point, I took PC-SPES, a Chinese herbal remedy. This was actually recommended by a urologist at a hospital in New York who was being treated for colon cancer and was taking a similar compound, called SPES. I started taking a version for prostate cancer, PC-SPES, and it was very effective in lowering my PSA levels. But at the doses I was taking, it was mentally debilitating. So eventually I stopped. But I don’t regret taking it. I took it for the same reason that I’d consider hormone therapy at some point: Because the side effects aren’t permanent. And then the FDA took it off the market, because certain batches were contaminated with medications such as DES. [Note: DES is a synthetic estrogen once given to women to help prevent miscarriage. The manufacturer of PC-SPES is out of business; the supplement is no longer available.]

So I’ve really collected information from multiple sources, and then I evaluate the source. So, for example, if I read about a Harvard study, I figure that’s pretty reliable. But if someone is promoting something and I’ve never heard of it or them, I might look for information elsewhere and ask some people I respect before trying it.

How often do you monitor your PSA levels? And what other evaluations do you undergo to make sure the cancer is not advancing?

Since I was diagnosed, my PSA has moved up slowly from about 5.7 to about 12.2. So that’s a little more than double in the last 10 years. If we knew that was the doubling rate then it’d be great — I’d live to 140 — but of course the doubling rate could change.

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 [see “Monitoring tests”]. 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.

Monitoring tests

During a period of active surveillance, physicians may recommend the following tests to determine if prostate cancer is advancing:

  • Endorectal MRI
  • Abdominal-pelvic CT scan
  • Bone scan

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.

Your PSA levels have been elevated a few times, and you’ve found that these increases correlate with travel. Can you describe your experience with this?

A few times, my PSA has spiked. One time, it went from 8.6 to 11.7. Another time, it went from 8.9 to 12.0. I suspect it has to do with changes in my lifestyle. On probably four occasions, when I traveled to India and then had a PSA test after my return, we found the PSA jumped. I think that’s because of a combination of stresses. First of all, just sitting in an airplane for 10 or 12 hours is hard on the body, not to mention traveling through all those time zones. And when I travel like that I tend to get off my regimen. I’ll eat vegetarian food, but it may not be exactly what I would eat at home. I tend to be less diligent with my supplements when I’m traveling. I don’t get massages or practice other stress-reduction techniques. But so far, once I’ve been home for a while, my PSA levels stabilize or come back down to where they were.

What would have to change for you to consider being treated more traditionally? And what would you do?

If my PSA started to shoot up significantly, or stayed elevated, then I would talk to my doctor about how I might use hormone treatments to keep the disease at bay. I consider hormone treatment something to keep in my “gunnysack,” because although it involves side effects, for the most part they’re not permanent. Of course, before making a decision, I’d evaluate the known risks.

Few people in 1996 decided on active surveillance. Knowing what you do now, would your treatment selection be the same?

I know active surveillance isn’t for everyone. I just know that for me, this was the right choice. I’d make the same choice today that I did 10 years ago. But I’d be less afraid, and I’d be more decisive. You know, there’s more information now than there was 10 years ago. Now we know, for example, that prostate cancer metastases apparently may happen very early in the game, even earlier than the point at which I was diagnosed. And 10 years ago we didn’t know that my Gleason score [3+3] was only moderate risk. And then, of course, there’s been more information about alternative steps that help prostate cancer.

Any other thoughts?

This is sincere: I am glad to have cancer because it caused me to clean up my life. Today I feel better, I’m living healthier, and because of the lifestyle changes I’ve made, I’ve reduced my risk of heart attack, stroke, and other diseases. At least according to the actuarial tables, I’m going to live longer. So I’ve actually benefited from having this disease.

Originally published Jan. 1, 2007; last reviewed February 18, 2011.

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