Managing Too Much Information—The PCRI’s Approach

BY MARK SCHOLZ, MD

Knowledge is power. And what you don’t know can indeed hurt you.  However, in this modern information age, the deluge of unfiltered data can be completely overwhelming. How can patients without professional training sort it all out and distil for themselves a sensible plan of action?

No one can offer a quick fix.  Prostate cancer is too complex and there are too many behind-the-scene conflicts-of-interest simply to trust the first smiling doctor you encounter.  Although you can’t escape from the responsibility of doing your homework, you had better make sure you’re in the right classroom.

Because prostate cancer is so varied in how it affects men, PCRI has divided the disease into five major categories, which we have called Shades of Blue.  This division emphasizes the extreme diversity of this infirmity we call prostate cancer, a condition that ranges from totally innocuous to fatal.

In the process of learning about prostate cancer, failing to stick to the domain of a single Shade is like wandering randomly between five classrooms that are teaching five different subjects. Is it any wonder there is so much confusion? Patients don’t need more information. They need unbiased information that is tailored to their specific needs, i.e. their Shade of prostate cancer.

When you think about it, it’s obvious why we need a new approach to information management. In the old days, new discoveries came slowly. The doctors who were thought leaders had plenty of time to attend medical conferences to discuss disease management in a leisurely fashion to achieve broad consensus. Those days are gone forever. In this era of rapidly changing technology, consensus about a treatment probably means the treatment is out of date. These days, new treatments are vetted by experts on primetime news. Unfortunately, breaking news, due to its fundamental need to be controversial and attract an audience, tends to emphasize fringe thinking.

Relying on traditional university centers to define a sensible, middle-of-the-road plan of action is also no longer possible.  Prostate cancer is big business and most large treatment centers specialize in one form of therapy such as radiation or surgery to the exclusion of all the others. Studies show that large specialty centers do indeed yield better quality than centers treating fewer numbers of patients. However, the large centers are understandably biased toward recommending their specific form of therapy. Their advice about which treatment to select is all too often tainted by their financial conflict of interest.

The PCRI’s mission is to fill the cavernous need for unbiased information that has been created by the accelerated rate of technological discovery. Rapidly exploding technology and new treatments are a great blessing as long as these powerful tools are applied selectively and appropriately to individuals who can benefit, while withholding potentially toxic treatments from those who won’t benefit or may actually be done some harm.

With the annual PCRI conference rapidly approaching, PCRI will continue striving to fulfill its mission to provide up-to-date and scientifically-based information that helps patients and their families sort through the ever expanding number of treatment options.

The Illness Business

BY RALPH BLUM

With privileges come responsibilities. That’s the way it has always been. One of the great privileges in my life has been the availability of Medicare. And the responsibility? To be watchful, careful that I do not take undue advantage of that privilege. For example? Not undergoing a costly procedure that was not absolutely necessary just because I don’t have to pay for it.

I remember in my pre-teen years a series of silly scatological jokes, including book titles like The Yellow Stream by I. P. Daily. Well, recently, I saw an accusing article by Terry J. Allen published in In These Times, and entitled “Urology’s Golden Revenue Stream.” Made me smile. But it also started me thinking about the extent to which some doctors in the prostate cancer field might be favoring profit over good patient outcomes.

I need to point out here that Mark is not and has never been one of those doctors. Care and concern for the positive outcome as well as the quality of life of his patients has always been his priority. And the over-treatment that is driving up healthcare costs as well as exposing men with prostate cancer to unnecessary surgeries and radiation therapy was the main theme of our book—Invasion of the Prostate Snatchers.

So I was alarmed to learn that rather than accessing centralized equipment and sharing costs, physicians are concentrating on their own profits by buying super-expensive in-practice technologies that pay off only if regularly used. As a result, over-treatment is driving up health care costs as well as exposing patients to unnecessary treatments.

The Wall Street Journal recently exposed one example of the public cost of this pattern. About one third of all Medicare beneficiaries diagnosed with prostate cancer now get IMRT—the targeted radiation therapy for which doctors can charge Medicare as much as $40,000 per patient. According to the Journal, some urology practices are paying more than $3 million for “turnkey” IMRT setups, and the sharp rise in IMRT use is partly driven by financial incentives. And given that the necessity for aggressive treatment for many prostate cancer patients, especially the elderly, is controversial to say the least (as far back as 2006 a study in the Journal of the National Cancer Institute found 45 percent of men receiving IMRT were “over-treated”), this seems to me to be an abuse of Medicare as well as abuser of all those men who risked the inevitable unpleasant side-effects of unnecessary treatment.

So, continuing in the spirit of Mark’s and my book, Invasion of the Prostate Snatchers, it also occurs to me that an increased sensitivity to the out-of-control cost of medical care might be an added incentive to newly diagnosed men to avoid the over-treatment so pervasive in the prostate cancer world today.

Too Many Prostate Biopsies

BY MARK SCHOLZ, MD

Every year in the United States one million men undergo a prostate biopsy.  Biopsy has a number of potential complications including serious infections requiring hospitalization and bleeding severe enough to require transfusions. One-percent of urologists have had a patient die from a biopsy-induced infection.

Despite these daunting risks, the real danger men face is the diagnosis of cancer.  In the United States, ninety percent of men who are diagnosed with prostate cancer undergo radical treatment, even when they have the Low-Risk variety of the disease that can be safely watched.  Treatment for prostate cancer is hardly innocuous, commonly causing impotence and urinary incontinence.

Misguided but well-intentioned experts have cogently argued that the rampant overuse of unnecessary biopsies and radical treatment have become so egregious that PSA screening should be discontinued. However, evidence is strong that PSA screening does reduce prostate cancer mortality.

So how can this dilemma be resolved? Is there a way to spare the men with Low-Risk disease while still detecting High-Risk prostate cancer while it is still curable?

Historically, biopsy has been the only accurate method for detecting prostate cancer.  However, for every case of High-Risk cancer detected, four or five men get the unpleasant news that they have Low-Risk disease, a diagnosis that usually leads to unnecessary treatment.

Two reports at this year’s American Urology Associate meeting indicate that modern multi-parametric MRI detects High-Risk prostate cancer very accurately.

In Abstract #2051 Dr. Noboru reported his findings in 320 men with PSA levels less than 10. They compared MRI with a standard 14-core biopsy. Only one man with very low volume disease in the Gleason 8-10 category was missed by MRI.

In Abstract # 1444 Dr. Emberton found that MRI accurately predicted the absence of any High-Grade cancer (Gleason score of 3 + 4 = 7 or above) with 95% accuracy.  Both Dr. Emberton and Dr. Noboru used a standard 1.5 Tesla MRI.  Enhanced, more accurate three Tesla MRI is available select centers.

High-quality prostate imaging is the only potential solution to the PSA screening conundrum.  Imaging detects High-Risk cancer that needs treatment. Men with Low-Risk disease can use the same technology for ongoing monitoring.

PSA screening is not the culprit for overtreatment in the U.S.   The policy of performing an immediate random, multi-core biopsy on every man with a PSA above 4.0 is the real problem. Fortunately, MRI imaging offers a viable alternative.

All Newly Diagnosed Men Should Be From Missouri. But There Are Limits . . .

BY RALPH BLUM

Missouri is known as the “Show Me State,”  a nickname made popular around 1899 by Congressman Willard Duncan Vandiver, who famously declared, "I'm from Missouri and you've got to show me." Appropriately enough, the state animal is a mule. Newly diagnosed men with prostate cancer, take heed. But also, know when to listen to the experts.

The newly diagnosed men I know who’ve had the best treatment results questioned everything related to the pros and cons of various treatment options. You need to develop the “I’m from Missouri” mindset, so that when an authority figure with a big reputation pronounces, “You need surgery. I’ve got space in my operating schedule next Thursday,” your automatic reaction is not “Whatever you say, doc.” It is “Well, I’m from Missouri and I need to know more before I make that decision.”

 Remember: 90% of us have the slow growing type of prostate cancer. Time is on our side. Second or even third opinions make sense. But—and I am here to tell you there’s a big “But…” Once you have chosen a treatment you had better pay attention to your doctor’s advice. I learned the hard way.

Back in 2002, when my PSA bumped up to 18.3, given my aversion to being sliced open, fried by radiation or poisoned by chemotherapy, it was only logical that I decided to pursue the minimally invasive treatment known as hormone blockade. The objective of hormone blockade is to reduce the production of testosterone—the hormone (androgen) in the blood credited with fueling the growth and spread of prostate cancer—as near as possible to castrate level. But there are some basic rules to follow once you opt for hormone blockage, and I soon began to wish I had taken Mark’s advice about how to avoid some of the adverse side effects that occur in the absence of testosterone. The most talked about one, of course, being no libido.

The protective measures are simple enough: You need to exercise in order to prevent weight gain and muscle wasting—even if, like me, exercise has not been part of your routine. Recommended: 45 minutes of weight training twice a week. Hate it, resent it, but do it. Otherwise? Somewhere down the line, chances are you’ll find your ability to lift, squeeze, steer and reach are all seriously compromised. The truth of “Use it or lose it” becomes painfully apparent. And the longer you wait, the greater the deficit, the harder to repair the damage.  

And then there’s my least favorite adverse side effect from injections of Lupron, which is breast enlargement.Official name gynecomastia. My options were: Either low dose radiation prior to the use of Lupron, or  taking the estrogen blocking drug Femara. I wasn’t keen on undergoing radiation unless it was of critical importance. And somehow I just never got around to taking Femara. Next thing I knew, there they were—my very own set of boobs. A souvenir of my trek through the libido-free zone.

So I’m a living example where ignoring instructions was mulish behavior of the wrong kind. If memory serves, this set of honkers is bigger than those of my first girlfriend. But on the bright side, after months of hormone blockade, my PSA had bottomed out at 0.05, only a breath away from the magic goal line marked “undetectable.” And nowadays, I am only from Missouri on carefully selected occasions.