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Thomas Goetz

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Making Good Decisions About Cancer: One Survivor's Tale

Posted: 02/05/10 09:01 AM ET

The basic approach to cancer screening in the US has been simple: Look for it early, and if you find it, get rid of it. That's the strategy that helped save thousands of lives from cervical cancer. And it's the strategy behind new screening tests for many other cancers.

But prostate cancer illustrates a flip side to that rote approach to cancer: Sometimes, it seems, cancer isn't something sure to be fatal. And sometimes the cure can be worse than the disease.

In these ambiguous situations, it's especially important to be mindful of your Decision Tree - to know exactly what your full range of options are, and what the consequences of every decision may be. It's something Tom Neville wished he'd known more about.

When Neville was told he had prostate cancer at age 54, he thought he knew exactly what the costs and benefits were: Unless he got treatment, he was going to die. As he saw it, he had two choices. He could undergo radiation therapy and hope to kill the cancer but save his prostate. Or he could have his prostate removed, which would be nearly certain to eliminate the cancer but carried significant risks of incontinence and impotence.

What Neville didn't realize at the time, though, is that though prostate cancer sounds horrible, the truth is that more than half of men have some cancer in their prostates by age 80, but less than five percent of those diagnosed actually die of the disease. These odds mean that, statistically speaking, the vast majority of men who have prostate cancer don't need treatment. In fact, as Neville says now, most men shouldn't even get a biopsy. What they don't know, he argues, probably won't hurt them.

The confusion starts with the screening test for prostate cancer itself--the PSA test. Short for prostate-specific antigen, PSA is a protein produced by the prostate gland. The PSA test measures the level of PSA in the blood. Some amount (around 1 nanogram per milliliter or more) is common, but a level of four or higher is considered suspicious of cancer (though some suggest that the suspicion threshold should be lowered to 3). As the number creeps over four, the reasoning goes, the probability rises that there is cancer.

Of course, the test doesn't actually measure cancer; it measures the amount of PSA, and there are all sorts of causes for a high PSA level besides cancer, starting with inflammation or infection. Still, a high PSA typically leads to a biopsy, and since so many older men have some trace of detectable cancer, it's not unusual to find something. But remember--just because there's cancer doesn't mean it's a lethal cancer. In other words, a high PSA level could prompt discovery of a coincidence, revealing a cancer that's probably never going to be a problem.

Tom Neville never properly understood this when he was considering treatment. Instead, when he got his diagnosis, he says, "I spent hours in the library. I was going cross-eyed reading research articles, trying to make sense of all this." What he did know was that his biopsy results had scared him. And no matter what the statistics were, "I had this emotional fear. I had a visceral reaction, to not want a cancer growing inside me. It was a get-it-out-of-me syndrome." And so on April 25, 2002, he had his prostate removed.

Even after his surgery, though, Neville, an engineer by training, kept poring over the research. Eventually he realized that he may not have needed surgery at all, given his low risk of dying from prostate cancer. But that information would have come in handy before his biopsy, before the word cancer had come into play with all its emotional associations. And he realized that it should be possible to give men more information sooner, so that they can assess their options before they get scared to death about a cancer inside them. Maybe the PSA test could start a process rather than compel a treatment. Maybe it would be possible to give people more choices, sooner.

What he came up with is Soar BioDynamics, a company that sells a decision-support tool for men who are trying to make sense of their PSA test results. The idea is to discern what, exactly, besides cancer could produce a high PSA level, so men don't move too quickly toward biopsy and removal, with all the latter's negative consequences. Using the information from a man's PSA test along with that from a few other easy tests and data points, Neville's tool calculates the most likely scenarios for what's happening inside a man's body, ranging from an enlarged prostate, to an infection, to a lethal cancer. The calculations are presented as probability scores for diagnoses. (The tool is a kind of nomogram -- a decision-making tool that combines individual information with best thinking from scientific research to create a personalized recommendation. They're a powerful idea for personalized medicine and you can read more about them here).

"We can cut way down on the false positives and eliminate detection of the cancers that aren't progressing. You want to catch the bad stuff but ignore the stuff you don't need to know about," he says. "Instead of a biopsy and surgery, maybe you just need to take an aspirin to cut down on the inflammation, or take antibiotics to take care of an infection."

Neville, who considers himself an acolyte of Clayton Christensen, is especially proud of how the Soar system has automated expertise. The computer model is based on published research, the same papers that made Neville scratch his head in the library back in 2002. But in this case, it customizes the research, flipping it from an abstraction into something tailored to an individual's circumstances. It turns this great heap of science into a basis for making clearer decisions.

"The issue isn't just what decisions you make, but what order you make them in," says Neville. "We're trying to switch the order of events. There's all this stuff driving people toward biopsy and treatment. We'd like to eliminate the unnecessary biopsies and only go to the expensive experts when it's highly warranted. We're not trying to do away with screening. The PSA test can be a valuable test; there's a lot of information in there. But it's important to know what the test actually shows."

 
 
 

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The basic approach to cancer screening in the US has been simple: Look for it early, and if you find it, get rid of it. That's the strategy that helped save thousands of lives from cervical cancer. An...
The basic approach to cancer screening in the US has been simple: Look for it early, and if you find it, get rid of it. That's the strategy that helped save thousands of lives from cervical cancer. An...
 
 
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lightist
light as a photon, heavy as tungsten.
03:35 PM on 02/06/2010
Diet is a key ingredient in curing the incurable. Diet with the specific additional nutrients one's particular body condition calls for. We are quite backwards here about the idea of slow medicine being sure medicine. One or two years of radical diet change, if one has that much time to live, can and does change the way the whole body works. Personally, I had a so called incurable condition that western medicine said would cripple me. I was advised by a doctor in Paris to stop eating a whole host of foods that are 'normal' to eat. He never said it was a macrobiotic diet, but it mostly was. Within two weeks I felt my body begin to 'change' for the better. Within six months I knew it was the best thing I'd ever done for my body (and mind). Within a year I'd mostly flushed the condition out of my body. Within two years I knew my body was not only completely rid of this crippling condition, but that my mind was clearer than ever. It's been 23 years and food is a central part of healing anything that comes to roost in my body. Food is the most important healing agent that nature has to offer us and it's the hardest one for most people to truly believe in. It's what most of us put in the center of our bodies three times a day for all our lives. Meditate on the truth of this.
01:18 PM on 02/05/2010
What the current spate of prostate-cancer-doesn't-need-to-be-treated stories miss is that the study populations have individuals with very different backgrounds. Most men are diagnosed with prostate cancer when they are over 65. These guys comprise the bulk of the study populations. At that point it is likely to be slow growing, but only a biopsy will tell you which sort of cells (the Gleason Score) you have. What these stories miss is that the younger you are, the more aggressive the cancer tends to be. So if you are say 55 and under, and you have prostate cancer, it may well kill you versus someone 15-20 years older who will likely die of some other cause first. I know; I had a Gleason 9 and a very aggressive cancer at age 49. After having my prostate removed, I'm doing anti-androgen therapy and radiation as post-surgery PSA tests show the disease is persistent -- and still trying to grow. And the 4.0 worry level for the PSA is very outdated. What counts is the rate of increase, or the change; if you have a PSA of 1 and it goes to 2 in six months or a year, that's a big red flag. The takeaway: make sure a study's population represents you, not a different age group, before you apply it to yourself.
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Thomas Goetz
01:45 PM on 02/05/2010
You're exactly right, Tallman7, and that's the message that I - and in turn Soar - are trying to get across: there is no such thing as a one-size-fits-all cutoff for prostate cancer. If we take advantage of everybody's specific information and tailor the research to fit, then we'll be much better armed to make the best decision.
03:47 PM on 02/07/2010
Tallman7 and I share almost the same situation. Everything about my 2009 diagnosis and treatment decision was focused on a man much older than myself. I am outraged at the lack of messaging to younger men and also at SOAR'S plan to create a "pay for information" web model. I applaud Mr. Neville for taking action and guess that Mr. Neville was given the same two options as me: either surgery or radiation. This lose-lose situation resulted from the Gleason score and biopsy; naturally one might want to backup time before testing when life wasn't so scary. But today, low-scoring PSA victims have a variety of choices including waiting and/or changes in diet. And the fact remains (and supports Neville's actions), this type of cancer is not one-size fits all so effective decision making is sorely needed. I think the answer is not in deferring a pre-decision based on a computer model. It is when science identifies what "type" of cancer a man has in his prostate and proves that indolent cancer is more common in most men. In the end, aggressive prostate cancer was active and on the move in Mr. Neville, Mr. Tallman7 and myself which ensures we will be PSA tested the rest of our lives (and all of us without a prostate), crucial decisions will need to be made with every result. Maybe it is here where the computer model can help-alas for an annual $80 price tag.
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ecoalex
Ecofarmer
11:51 AM on 02/05/2010
There are alternatives to chemo and radiation treatments for cancer;baking soda, blood root and enzymes, and other treatments.allelopathic medicine. When radiation has been used ,it cannot be used again in the same area, the damage done is too much to use it again.Alternative treatments is all that is left in some forms of cancer.The AMA is slow to accept alternative treatments which do work.The drug, radiation industry have to much influence in cancer treatments.They are barbaric compared to less damaging treatments which do have good results;the elimination of cancer. Google these treatments, and see the results people have with alternative treatments.
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10:34 AM on 02/05/2010
One man's story. In 2000, at 76 my father died a painful, lingering death from complications of prostate cancer. He had radioactive seed implants some years before, was sloppy in his follow up, and succumbed to the disease. In 2004, at 54, my PSA rose. I had a biopsy and was diagnosed with prostate cancer. I had a radical prostatectomy. My worst side effects have been a frequent need to urinate and occasional episodes of incontinence (drinking beer, drinking coffee late in the day, etc.) I can get an erection with and without drug aides. Would I be dead without treating the cancer? Will it kill me someday? Who knows? I wish i had videotaped my father's death to show men with a diagnosis of prostate cancer. Not to alarm them. But as a valid part of this debate. Certainly my family has a genetic tendency towards the disease. I will insist that my son has a PSA test when he turns 40. Others can skip PSA tests at their own risk. Hang my story as an ornament on your decision tree.
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harpo73
01:23 PM on 02/05/2010
well said, it will be my privilege to be your first fan.
stevesrant
Here I am stevesrant.
10:13 AM on 02/05/2010
Gread post, thanks for the valuable info.. You also illustrate a major flaw in modern medical practice, which is (often) the non-dissemination of clear, basic information to the patient. Any good decision- making depends on good data.