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December 22, 2004

BehindTheMedspeak:Is being left-handed a disease?



Until well into the twentieth century, many believed it to be, and did their level best to "cure" children of it.

How about homosexuality?

It was only eliminated from the American Psychological Association's list of mental illnesses in 1973.

What about Asperger syndrome?

Bill Gates probably has it, as did Isaac Newton.

Does that mean they need(ed) treatment?

If so, what does it mean to be "cured?"

These are the issues Amy Harmon explored in a probing front page story which appeared in this past Monday's New York Times.

It was about the fierce battle going on in the world of autism and its variants, often termed the "autistic spectrum."

In one corner, parents who want their kids to be diagnosed early, then intensively treated to become more "normal."

In the other, individuals along the autistic spectrum who say, "We don't have a disease, so we can't be 'cured.'"

Caught in between, the many parents fearing their children will end up isolated and unreachable unless they intervene early and forcefully.

You can now buy Autistic Liberation Front


buttons online, among other things.

One mother of an autistic child quoted in the Times article said, "It is no more normal to be autistic than it is to have spina bifida."

Read the story and come to your own conclusions.

    How About Not 'Curing' Us, Some Autistics Are Pleading

    Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation's roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism.

    "We don't have a disease," said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills.

    "So we can't be 'cured.' This is just the way we are."

    From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program's description of people "suffering" from Asperger's syndrome, the form of autism he has.

    "People don't suffer from Asperger's," Justin said.

    "They suffer because they're depressed from being left out and beat up all the time."

    That, at least, was what happened to these students at mainstream schools before they found refuge here.

    But unlike many programs for autistics, this school's program does not try to expunge the odd social behaviors that often make life so difficult for them.

    Its unconventional aim is to teach students that it is O.K. to "act autistic" and also how to get by in a world where it is not.

    Trained in self-advocacy, students proudly recite the positive traits autism can confer, like the ability to develop uncanny expertise in an area of interest.

    This year's class includes specialists on supervolcanoes and medieval weaponry.

    "Look at Jack," Justin pointed out.

    "He doesn't even need a map. He's like a living map."

    The new program, whose name stands for Autistic Strength, Purpose and Independence in Education - and whose acronym is a short form of Asperger's - is rooted in a view of autism as an alternative form of brain wiring, with its own benefits and drawbacks, rather than a devastating disorder in need of curing.

    It is a view supported by an increasingly vocal group of adult autistics, including some who cannot use speech to communicate and have been institutionalized because of their condition.

    But it is causing consternation among many parents whose greatest hope is to avoid that very future for their children.

    Many believe that intensive behavioral therapy offers the only rescue from the task of caring for unpredictable, sometimes aggressive children, whose condition can take a toll on the entire family.

    The autistic activists say they want help, too, but would be far better off learning to use their autistic strengths to cope with their autistic impairments rather than pretending that either can be removed.

    Some autistic tics, like repetitive rocking and violent outbursts, they say, could be modulated more easily if an effort were made to understand their underlying message, rather than trying to train them away.

    Other traits, like difficulty with eye contact, with grasping humor or with breaking from routines, might not require such huge corrective efforts on their part if people were simply more tolerant.

    Spurred by an elevated national focus on finding a cure for autism at a time when more Americans are receiving autism diagnoses than ever before - about one in 200 - a growing number of autistics are staging what they say amounts to an ad hoc human rights movement.

    They sell Autistic Liberation Front buttons and circulate petitions on Web sites like neurodiversity.com to "defend the dignity of autistic citizens."

    The Autistic Advocacy e-mail list, one of dozens that connect like-minded autistics, has attracted nearly 400 members since it started last year.

    "We need acceptance about who we are and the way we are," said Joe Mele, 36, who staged a protest at Jones Beach, on Long Island, while 10,000 people marched to raise money for autism research recently.

    "That means you have to get out of the cure mind-set."

    A neurological condition that can render standard forms of communication like tone of voice, facial expression and even spoken language unnatural and difficult to master, autism has traditionally been seen as a shell from which a normal child might one day emerge.

    But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed.

    The effort to cure autism, they say, is not like curing cancer, but like the efforts of a previous age to cure left-handedness.

    Some worry that in addition to troublesome interventions, the ultimate cure will be a genetic test to prevent autistic children from being born.

    That would be a loss, they say, not just for social tolerance but because autistics, with their obsessive attention to detail and eccentric perspective, can provide valuable insight and innovation.

    The neurologist Oliver Sacks, for instance, contends that Henry Cavendish, the 18th-century chemist who discovered hydrogen, was most likely autistic.

    "What they're saying is their goal is to create a world that has no people like us in it," said Jim Sinclair, who did not speak until he was 12 and whose 1993 essay "Don't Mourn for Us" serves as a touchstone for a fledgling movement.

    At this year's "Autreat," an annual spring gathering of autistics, attendees compared themselves to gay rights activists, or the deaf who prefer sign language over surgery that might allow them to hear.

    Some discussed plans to be more openly autistic in public, rather than take the usual elaborate measures to fit in.

    Others vowed to create more autistic-friendly events and spaces.

    Autreat participants, for instance, can wear color-coded badges that indicate whether they are willing to be approached for conversation.

    Common autistic mannerisms, like exceedingly literal conversation and hand-flapping, are to be expected.

    Common sources of autistic irritation, like casual hugs and fluorescent lighting, are not.

    For many parents, however, the autistic self-advocacy movement often sounds like a threat to the brighter future they envision for their children.

    In recent months, the long-simmering argument has erupted into an online brawl over the most humane way to handle an often crippling condition.


    On e-mail lists frequented by autistics, some parents are derided as "curebies" and portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating.

    Parents argue that their antagonists are showing a typical autistic lack of empathy by suggesting that they should not try to help their children. It is only those whose diagnosis describes them as "high functioning" or having Asperger's syndrome, they say, who are opposed to a cure.

    "If those who raise their opposition to the so-called oppression of the autistic would simply substitute their usage of 'autism or autistic' with 'Asperger's,' their arguments might make some sense," Lenny Schafer, publisher of the widely circulated Schafer Autism Report, wrote in a recent e-mail message.

    "But I intend to cure, fix, repair, change over etc. my son and others like him of his profound and typical disabling autism into something better. Let us regain our common sense."

    But the autistic activists say it is not so easy to distinguish between high and low functioning, and their ranks include both.

    In an effort to refute parental skeptics, the three owners of autistics.org, a major Web hub of autistic advocacy, issued a statement listing their various impairments.

    None of them are fully toilet-trained, one of them cannot speak, and they have all injured themselves on multiple occasions, they wrote: "We flap, finger-flick, rock, twist, rub, clap, bounce, squeal, hum, scream, hiss and tic."

    The touchiest area of dispute is over Applied Behavior Analysis, or A.B.A., the therapy that many parents say is the only way their children were able to learn to make eye contact, talk and get through the day without throwing tantrums.

    Some autistic adults, including some who have had the therapy, say that at its best it trains children to repress their natural form of expression and at its worst borders on being abusive.

    If an autistic child who screams every time he is taken to the supermarket is trained not to, for example, he may still be experiencing pain from the fluorescent lights and crush of strangers.

    "Behaviors are so often attempts to communicate," said Jane Meyerding, an autistic woman who has a clerical job at the University of Washington and is a frequent contributor to the Autistic Advocacy e-mail discussion list.

    "When you snuff out the behaviors you snuff out the attempts to communicate."

    Perhaps the most public conflict between parents and adult autistics came in a lawsuit brought by several Canadian families who argued that the government should pay for their children's A.B.A. therapy because it is medically necessary.

    Michelle Dawson, an autistic woman in Montreal, submitted testimony questioning the ethics of the therapy, which the Canadian Supreme Court cited in its ruling against the families in November.

    Ms. Dawson's position infuriates many parents who are fighting their own battles to get governments and insurance companies to pay for the expensive therapy.

    "I'm afraid of this movement," said Kit Weintraub, the mother of two autistic children in Madison, Wis.

    Ms. Weintraub's son, Nicholas, has benefited greatly from A.B.A., she said, and she is unapologetic about wanting to remove his remaining quirks, like his stilted manner of speaking and his wanting to be Mickey Mouse for Halloween when other 8-year-olds want to be Frodo from "The Lord of the Rings."

    "I worry about when he gets into high school, somebody doesn't want to date him or be his friend," she said.

    "It's no fun being different."

    The dispute extends even to the basic terminology of autism.

    "I would appreciate it, if I end up in your article, if you describe me as 'an autistic' or 'an autistic person,' versus the 'person with...,' " Ms. Dawson wrote in an e-mail message.

    "Just like you would feel odd if people said you were a 'person with femaleness.' "

    Ms. Weintraub insists on the opposite.

    "My children have autism, they are not 'autistics,' " she wrote in her own widely circulated essay, "A Mother's Perspective."

    "It is no more normal to be autistic than it is to have spina bifida."

    Terry Walker, 37, who has Asperger's syndrome, said he was not opposed to the concept of a cure for autism but he suggested that there was a pragmatic reason to look for other options.

    "I don't think it's going to be easy to find," Mr. Walker said.


    "That's why I opt for changing the world around me; I think that does more long-term good."

December 22, 2004 at 04:01 PM | Permalink | Comments (1) | TrackBack

Let Each Man Remember - by Josephine Jacobsen

There is a terrible hour in the early morning
When men awake and look on the day that brings
The hateful adventure, approaching with no less certainty
Than the light that grows, the untroubled bird that sings.

It does not matter what we have to consider,
Whether the difficult word, or the surgeon's knife,
The last silver goblet to pawn, or the fatal letter,
Or the prospect of going on with a particular life.

The point is, they rise; always they seem to have risen
(They always will rise, I suppose) by courage alone.
Somehow, by this or by that, they engender courage,
Courage bred in flesh that is sick to the bone.

Each in his fashion, they compass their set intent
To rout the reluctant sword from the gripping sheath,
By thinking, perhaps, upon the Blessed Sacrament,
Or perhaps by coffee, or perhaps by gritted teeth.

It is indisputable that some turn solemn or savage,
While others have found it serves them best to be glib,
When they inwardly lean and listen, listen for courage,
That bitter and curious thing beneath the rib.

With nothing to gain, perhaps, and no sane reason
To put up a fight, they grip and hang by a thread,
As fierce and still as a swinging threatened spider.
They are too brave to say, It is simpler to be dead.

Let each man remember, who opens his eyes to that morning,
How many men have braced themselves to meet the light,
And pious or ribald, one way or another, how many
Will smile in its face, when he is at peace in the night.


December 22, 2004 at 03:01 PM | Permalink | Comments (0) | TrackBack

Nigo and Bathing Ape


[Note: BAPE in New York City is located at 91 Greene St. in SoHo. The telephone number is 212-925-0222]

Wired magazine is where I became familiar with the term "street cred," and no one's got more of it than Nigo (above), creator of Bathing Ape urban street ware.

He started his business in 1993 when he was 22, with a hole-in-the-wall T-shirt shop in the Harajuku district of Tokyo, that city's equivalent of the Lower East Side of New York.

In a story by Lola Ogunnaike in last Sunday's New York Times, he said, "when we first got there it was the quietest area of Tokyo, and now it's one of the coolest areas in Tokyo."

It's amazing what street cred can do for a street.

Bathing Ape's just opened a store in Manhattan's SoHo, the 16th outpost in its burgeoning empire which includes stores in Kyoto, Osaka, and London.


The stores are unmarked and intentionally made difficult to find, and sell clothes produced in carefully limited quantities to make them more scarce and, subsequently, more desirable.

Nigo also decrees that customers may buy only one piece of any product, and it must be in their size.

He said, "It's to help prevent people from selling the clothes on the black market. I really don't want a lot of people wearing my clothes."


I feel the same way.

That's why I never let anyone borrow my clothes. But I digress.

His Bape (shorthand for Bathing Ape) shoes sell for around $300 a pair in Manhattan, though they're going to be priced at $180 in his new store.

Rappers Jay-Z, Cassidy and Pharrell have been wearing them around town and in their videos, making them all the more desirable to those whose desires run in this direction.

Here's a link to the Times story.


I was musing about Nigo and fashion and street cred and what's hot and what's not and bookofjoe just now.

I'm never quite sure what to do about people and things like Nigo and Bathing Ape.

I mean, when something makes it into the New York Times, in a sense it's already over.

It's a little like the cover articles for Time, Fortune, and their ilk: when they herald the next big thing, the only thing you can be absolutely certain about is that the smart money has already been there and left.

The news that something is news is, actually, old news to those who made the best use of it.

Aristotle Onassis once said, "The secret of success in business is knowing something no one else knows."

True enough; of course, this is precisely what insider trading is all about.

Once everyone knows the secret, it's no longer a secret nor is it of much value.

So in a sense, I'm reluctant to even bother with things that are in the major media.

Better to stick with Zembla and Giant Robot and their ilk.


That's the idea, anyhow.

December 22, 2004 at 02:01 PM | Permalink | Comments (49) | TrackBack

World's 10 Most Enduring Institutions


• Dartmouth College

• Oxford University

• Modern Olympic Games

• Rolling Stones

• General Electric

• Sony

• American Constitution

• International Telecommunication Union

• Salvation Army

• Rockefeller Foundation

Hey, I just bring you the news.

It's not my list.

You got a problem with it, speak to global strategy and consulting firm Booz Allen Hamilton - they made the choices.

Warning: unlike me, they're not a charity.

It'll cost you a pretty penny.

December 22, 2004 at 01:01 PM | Permalink | Comments (0) | TrackBack

'I Colori del Bianco' [The Colors of White] - Ancient sculpture as it was meant to be seen


Though in the late 1700s scholars were aware of the multicolored hues of Greek and Roman sculpture, color was considered a only a minor, insignificant aspect of these creations.

The 1980s saw the beginning of a revolution in the study of color in antiquities.

Vincenz Brinkmann of Germany's Munich Glyptotek led the way, with a series of groundbreaking examinations employing ultraviolet light, infrared spectroscopy, and polarizing and scanning electron microscopy.

He showed that the use of brilliant pigments to paint statues, walls and buildings was routine, though the results, when applied to works long since bleached white, were anything but.

Electric yellows, vibrant reds, bright greens and blues, these were the true colors of antiquity.

On display through January 31 of next year at the Vatican Museum is a show of 30 objects recreated and then painted to look as they did when they were originally made thousands of years ago.

The originals are placed, whenever possible, next to the colored recreations.

In other cases, photographs or copies of the original are shown.

Pictured at the top of this post is a statue of the goddess Athena from 500-490 B.C., partly colored based on an analysis of the original, standing nearby.

Below is a recreated sculpture of the Emperor Augustus, as it looked when it was made in 20 B.C.


These are among the objects in the Vatican show.

Here's Sarah Delaney's story from yesterday's Washington Post.

    Ancient Sculpture, Seen Through a Prism

    The Venus of Milo or the Dying Gaul may come to mind when we think about ancient sculpture.

    Those famous pieces conform to the classical ideal of beauty, the ascendancy of form enhanced by the pure translucence of white marble.

    An ascetic aesthetic, practiced by sober and tasteful Greek and Roman sculptors who flourished more than two millenniums ago.

    Apparently, though, that's not exactly how it was.

    According to the curators of an exhibit at the Vatican Museum, that idea of perfect austere beauty is ours, not that of the ancients, who evidently preferred a vivid palette of electric yellows and blues, vibrant reds and bright greens to decorate sculptures, tombs and even the walls of ordinary buildings in Athens and Rome.

    Called "I Colori del Bianco" ("The Colors of White"), the exhibit demonstrates how art historians, archaeologists and scientists combined forces to re-create a hypothetical but highly probable color scheme of works from the archaic to early Byzantine periods.

    It's a first attempt to restore to modern imagination the brilliance that faded away over the centuries.

    Synthetic casts were made of several works and then painted according to careful analysis of the originals, contemporary texts and similar decorations preserved on ancient vases.

    Where possible, they are displayed in shocking juxtaposition with the original; in other cases photographs or copies of the original are shown.

    A sunshine-yellow reclining lion with a cobalt-blue mane and red whiskers guards the entrance to the show as a hint of what's to come.

    The garish colors of the beast, the cheerful patterning of a Trojan warrior and the symbolic painted scenes on a giant Emperor Augustus are enough to jolt the sensibilities of anyone used to considering pure white the predominant hue of ancient times.

    In reality, what may appear to be a micro-revolution in the way we look at art is nothing new for scholars.

    They have been well aware since at least the late 1700s of the multicolored variety in antiquities.

    Explanations accompanying the exhibits say the particular tastes of 18th-century German art historian Johann Joachim Winckelmann were in large part responsible for what became a collective idea of the masterpiece of the distant past.

    "Color contributes to beauty, but it is not beauty," he is quoted as saying in 1764.

    "Color should have a minor part in the consideration of beauty, because it is not [color] but the structure that constitutes its essence."

    Even in the 1700s, there were examples of colored statues and artifacts, and Winckelmann knew them, says Paolo Liverani, head of the classical antiquities department at the Vatican Museums.

    But because Winckelmann, considered to be the father of art history and archaeological study, was such an authoritative figure, his vision became the orthodox view and prevailed over the next two centuries.

    In the late 1800s, a brief resurgence of interest in studying the use of color by the ancients subsided, and was labeled "deceitful amusement" by one historian cited by Liverani.

    The ensuing oversimplification of Winckelmann's ideas, Liverani says, is evident in the gigantic, snow-white muscleman sculptures typical of the era of Italian dictator Benito Mussolini before World War II, and still visible today in some Rome streets and squares.

    The show "gives an image that is radically different than what we're used to seeing," says Liverani, who helped curate it.

    "But it's our idea of 'classic' that needs to be updated, not the Greeks and Romans who need to be corrected... White is modern."

    Research on the colors of ancient statuary began in earnest in Germany in the 1980s, especially by Vincenz Brinkmann of the Munich Glyptotek, or ancient sculpture museum, who used new technology to analyze it in several different ways.

    Ultraviolet rays revealed the faintest traces of color, while raking light, or very bright close light, detected the slightest relief that could come from an original sketch or be the result of the varied effects of weathering on the different pigments.

    Other techniques such as scanning electron microscopy, infrared spectroscopic analysis and polarizing microscopy were used to determine the components of the pigments.

    Most were mineral-based, Liverani says: malachite from Greece for green, bright blues from azurite from the Sinai and Italy, and most yellows and ochers from a poisonous arsenic-based mix.

    Red was from cinnabar, a mercury sulfide, mined in Spain.

    The only organic color came from the madder root, which provided a delicate, translucent red. Binders were egg- or milk-based.

    "The colors served to emphasize the religious or political content of the message the work was to convey," says Liverani.

    "Augustus of Prima Porta" shows a giant Emperor Augustus whose cuirass, or body armor, was painted with a white background to enhance red and blue scenes depicting an important diplomatic victory.

    The unnatural colors suggest that the statue was a symbol to be revered, much the way Christians revere a cross, Liverani says.

    Green snakes that form a fringe on the cape of the colored model of the goddess Athena were probably intended, in the original version, to provoke fear and awe, Liverani says.

    This model was only partly colored because there weren't sufficient traces of color found on the rest to make a reasonable hypothesis.

    Establishing the colorful pattern on an archer allowed researchers to identify him as a Trojan, probably Paris, son of King Priam.

    This and other figures decorated the pediment of the Greek temple of Aphaia from the late 5th century B.C.

    "We are only at the very beginning of the discoveries to be made with this sort of analysis," says Liverani, "and there is always more to discover."

    The show, which contains more than 30 objects, was put together with the help of scholars and technicians from two antiquities museums: the Ny Carlsberg Glyptotek of Copenhagen and the Munich Glyptotek, where the exhibit has already been shown.

    Both museums contributed pieces, along with the Vatican Museum.

    The show can be seen without entering the main Vatican Museum, and admission is free.

    It will be on view until January 31.

December 22, 2004 at 12:01 PM | Permalink | Comments (2) | TrackBack

Muppet Stamps


Coming in March of next year, a series of 11 stamps, 10 with Muppet favorites and one of their creator, Jim Henson.

Kermit the Frog, Miss Piggy, The Swedish Chef, Bunson and Beaker and Statler and Waldorf, they'll all be there.

Since they first appeared in 1976, long before you were born, they've become a part of the landscape.

At their peak, their show was watched by an estimated 235 million viewers per week in more than 100 countries.

Why, that's more people than visit bookofjoe!


Lots more in the way of fun stamps coming next year from the U.S. Postal Service: look for Mickey Mouse and other Disney characters, Greta Garbo, Henry Fonda, and many more.

What I want to know is, why did I have to go to the BBC to find out about this?

[via Simon Bisson]

December 22, 2004 at 11:01 AM | Permalink | Comments (1) | TrackBack

P2P's successor - C2C?


Shorthand for the Car-2-Car Communications Consortium, currently developing the new new thing in car technology.

BMW, Fiat, Audi, Daimler-Chrysler, Volkswagen, and Renault have banded together to explore ways for cars of the future to warn each other of accidents and danger spots and automatically find new routes to avoid congestion.

They hope to create vehicles that can communicate via WiFi.

This reflects efforts to move from "passive" safety - airbags, more crash-resistant vehicles - to "active" safety, where cars help drivers avoid accidents.


I predict that the cars and roads of the future will be completely automated, with cars moving in synchrony and their drivers reading, sleeping, or doing God knows what.

There'll be no traffic jams, no accidents, and no stress.

I also predict a "Kamikaze" lane where those with lots of energy and a strong death wish can drive their own vehicles if they so choose.

I further believe that, say, 30 years from now, when people watch film of today's roads and cars, they will be almost unable to believe that we allowed anyone who could fog a mirror to drive their own car against opposing traffic separated by nothing more than a line painted down the middle of the road.

Below, a story from last Friday's Financial Times by James Mackintosh about the slowly-gathering revolution.


    Makers Explore Car-To-Car Warning

    Six European carmakers are planning a future where cars warn each other of accidents and danger spots and automatically find new routes to avoid congestion.

    The manufacturers, which build half of Europe's cars, hope to produce vehicles that can communicate electronically using the WiFi wireless networking standards becoming the norm for portable computers.

    Most of the world's big carmakers have been experimenting with vehicle-to-vehicle communications for years, but the European group is thought to be the first serious attempt to develop common systems.


    The group, known as the Car-2-Car Communication Consortium, is planning to produce its first prototypes within two years.

    The moves reflect efforts by carmakers to move from "passive" safety - such as airbags and more crash-resistant vehicle bodies - to "active" safety, where cars help drivers avoid accidents.

    BMW has demonstrated the technology, using a broken-down Mini equipped with the system to warn an approaching 7-Series of the potential danger.


    In the future, the system could automatically pre-tense the brakes in nearby cars, speeding the driver's reaction time, or instruct navigation computers in more distant vehicles to find alternative routes.

    Other members include Volkswagen, Audi, DaimlerChrysler, Fiat and Renault.

    The WiFi technology would bounce information from car to car, using relatively short-range technology to create a large network of vehicles.


    However, some experts remain sceptical about how such a system would be paid for.

    "Technically they can do it," said Dave Benson, a senior consultant at SRI Business Intelligence in California.


    "But there are huge business model issues so we are talking some years down the line."

December 22, 2004 at 10:01 AM | Permalink | Comments (0) | TrackBack

BehindTheMedspeak: 'Everyone has cancer growing somewhere in their body'


So says Dr. Ian M. Thompson, chairman of the urology department at the University of Texas Health Science Center at San Antonio.

He was quoted by Amy Dockser Marcus in her superb story, which appeared in this past Monday's Wall Street Journal, on the perils of early cancer detection.

Last week here I noted the problems associated with mammography and the uncertainty that accompanies radiological screening for breast cancer.

In a paper published earlier this year, Drs. Judah Folkman and Raghu Kalluri coined the term "cancer without disease" to describe the phenomenon, now believed by many researchers to be likely, that most - if not all - people will live their entire natural lifespan with trace amounts of some cancers without ever knowing it was there.

Autopsies of men in their 70s who died of causes other than cancer found 80% had microscopic cancers in their prostates.

Some physicians have stopped obtaining routine PSA (Prostate Specific Antigen, a blood-born marker for prostate cancer) levels because of the high incidence of false positives leading to costly, potentially hazardous, and ultimately fruitless results.

If you turn up the sensitivity of any medical test high enough, eventually you'll start generating false positives.

Consider that until earlier this year, a PSA level of less than 4 was considered normal.

Then, after finding that some patients with levels below 4 turned out to have prostate cancer, a new "normal" range of up to 2.5 was established.

The PSA level that started John MacMahon's nightmare of a work-up, detailed in the Wall Street Journal article, was 3.1.


After you're done reading the story, consider this: though MacMahon's physicians told him he had only two choices: either wait and risk having an incurable cancer, or operate now, there was, in fact, a third.

That would be to wait not just with the possibility of having his cancer - if he even had it, which isn't clear - become incurable, but also with the hope that 1) a better diagnostic test would come along, perhaps finding that indeed he didn't have cancer at all, or 2) that a non-surgical, effective medical or non-invasive radiological treatment would be developed without the potentially devastating side-effects and complications of surgery.

Here's the article.

    At 32, a Decision: Is Cancer Small Enough to Ignore?

    Mr. MacMahon's Tests Found Signs in Very Early Stages; Screening Younger Patients

    Researchers' Startling Theory

    Two years ago, John MacMahon went in for a routine physical.

    During his checkup, his doctor drew blood and sent it out to have his prostate specific antigen level, or PSA, measured to screen for prostate cancer.

    Mr. MacMahon was 29, in great shape and had no family history of prostate cancer.

    His doctor said he just wanted to see what was normal for Mr. MacMahon, to measure future tests against.

    Mr. MacMahon's test came back showing an elevated PSA level - higher than what is considered normal for a man his age.

    But because many things, including increased sexual activity, inflammation, or even bike riding, can elevate a man's PSA, the doctor told him not to worry.

    In January 2004, a new doctor decided to redo the PSA test, and once again, Mr. MacMahon's level was elevated.

    It is extremely rare for a man that young to have prostate cancer.

    Just to be on the safe side, Mr. MacMahon was advised to undergo a biopsy, in which six samples of cells from his prostate were removed and tested for cancer.

    Five samples came back normal. One was deemed "suspicious," but the pathologist wasn't certain enough to call it cancer.

    A few days later, Mr. MacMahon moved from his hometown of Houston to New York City, to take a job as an analyst at a hedge fund.

    He worked long hours, then went to the gym to lift weights.

    On weekends, he went on 10-mile runs. But the unusual finding worried him. In

    May, he went to Memorial Sloan-Kettering Cancer Center in New York and got tested again.

    This time, 12 samples of his prostate were removed.

    Eleven came back normal.

    One, however, didn't.

    "It was frustrating," says Mr. MacMahon, who is now 32.

    "I was so confused."

    Did he have cancer?

    The pathology report from Memorial Sloan-Kettering said yes.

    But the experts he consulted in the six months following his diagnosis were divided about whether he needed to be treated immediately.

    Prostate cancer is often a slow-growing disease, and in older men, some doctors recommend waiting when the amount of cancer is small.

    Mr. MacMahon's dilemma was different. His cancer was found at such an early stage, and in such a tiny amount, that it wasn't clear what he should do.

    His predicament reflects a startling new idea suggested by a growing number of researchers: Almost everyone harbors cells in their body that could be called cancer.

    Because detection methods have greatly improved in recent years, more people are being diagnosed with cancer at its earliest stages.

    This is creating new questions.

    When is cancer the kind that can kill you and needs to be treated - with all the toxic therapies and damaging side effects that go along with that decision?

    And when is it too small to matter?

    Autopsy studies have shown that people who died of other causes sometimes have cancer in their bodies.

    Researchers at Wayne State University in Detroit found 8% of 1,027 men in their 20s, who died of other causes, had small amounts of prostate cancer.

    In its study of 1,500 men, which lasted more than a decade, the percentage of those with cancer rose during each decade of a man's life.

    Fully 80% of men in their 70s were found to have microscopic cancers in their prostates during autopsies.

    Other autopsy studies have found microscopic amounts of cancer in the lungs, breasts, and thyroids of people who have died of other causes and weren't known to have cancer.

    People may live their entire lifetime with trace amounts of some cancers without ever knowing it was there, some doctors now say.

    In a paper published earlier this year by Judah Folkman of Children's Hospital Boston and Raghu Kalluri of Beth Israel Deaconess Medical Center in Boston, the researchers coined a term for this phenomenon.

    They called it "cancer without disease."

    The National Cancer Institute says the idea is gaining attention, but more research is needed.

    Yet some are convinced.

    Says Ian M. Thompson, chairman of the urology department at the University of Texas Health Science Center at San Antonio: "Everyone has cancer growing somewhere in their body."

    The number of people living five years or more after being diagnosed with cancer continues to rise and now is an estimated 10 million.

    New drugs can hold some tumors in check, making cancer more like a manageable chronic illness, such as diabetes.

    But if nearly everyone has traces of the disease, then "what is meant by having 'cancer'?" asks H. Gilbert Welch, a professor at Dartmouth Medical School who has researched issues surrounding early detection.

    In one study, Dr. Welch and his colleague William C. Black looked at an early form of breast cancer, confined within a single milk duct, and how its diagnosis has skyrocketed, thanks to powerful imaging machines that detect the tiniest abnormalities.

    The cancer was found so early in some patients that doctors weren't sure which would spread to the rest of the breast and turn lethal, and which wouldn't.

    In such situations, more women are being forced to decide whether to undergo treatment.

    Increasingly, cancer tests are being given to younger people by doctors who, like Mr. MacMahon's physician, want to establish a "baseline" - to see what is normal for a specific patient.

    But if these tests find anything unusual, they can force an agonizing decision.

    In Mr. MacMahon's job at the hedge fund, he sits on a trading floor in front of four screens, tracking the stock market and developments in companies he covers.

    He often has to make decisions, he says, "in the face of ambiguity and conflicting information."

    When it came to his cancer, at first, he didn't feel any ambiguity.

    He wanted whatever was there, no matter how small, out of his body immediately.

    "Then I started telling people about it," he says, "and realized surgery was a bigger deal than I thought."

    The most established way to treat prostate cancer is to have the prostate removed.

    Some men opt for radiation treatments, which seek to eradicate the tumor.

    Mr. MacMahon's doctors urged him to have surgery.

    They worried the effects of radiation might not last his entire life.

    If the cancer came back in 20 years, surgery on a prostate that had already undergone radiation was risky.

    Removing the entire prostate offered him the best chance for life-long freedom from the disease, they contended.

    But surgery has huge risks - including impotence, incontinence and infertility. Mr. MacMahon, who is single, says he would like to have children someday.

    The walnut-sized prostate sits near the nerves that control bladder function as well as the ability to have an erection.

    He went to discuss his concerns with Peter T. Scardino, chairman of urology at Memorial Sloan-Kettering.

    Dr. Scardino told him the vast majority of men in their mid-40s to age 70 will, within two years of surgery, be able to have an erection "good enough for intercourse."

    Men under 50 recover sooner than other patients, he said.

    But 5% to 10% of patients don't recover erections, even with the help of drugs, he said, "and why this is, we don't fully know."

    The statistics frightened him, Mr. MacMahon says.

    "It is not like 90% in this case is an A," he says. "Anything short of perfection is an F."

    Mr. MacMahon went for a second opinion at New York University School of Medicine.

    He asked a specialist if he could wait until he was 35 to get treated.

    The doctor told him his odds of a full cure were never better than if he had the surgery now - but he probably could delay treatment for years.

    "It made me think that some people were looking at the same pattern and weren't seeing the same things," Mr. MacMahon says.

    This year, more than 240,000 men will be diagnosed with prostate cancer, according to the Prostate Cancer Foundation.

    Nearly 30,000 will die from it.

    But the rate of survival five years after diagnosis is excellent - 98% - because it is a slow-growing cancer, and often caught early enough to be treated.

    In July, Mr. MacMahon flew back to Houston, to consult with Christopher J. Logothetis, director of the Genitourinary Cancer Center at M.D. Anderson Cancer Center in Houston.

    Mr. MacMahon's father, Andrew, a pediatrician, went with him. "I was on the fence about what he should do," Dr. MacMahon says.

    Dr. Logothetis was blunt in analyzing the decision that had to be made.

    "John can wait and expose himself to the risk that the disease gets out from under us," Dr. Logothetis recalls telling them.

    "Or we can operate on him before he may need it," taking the risk of making him infertile and impotent.

    "He has two awful choices and unfortunately he has to pick one."

    Dr. Logothetis told Mr. MacMahon he might want to wait a year, with careful monitoring, to see if the tumor grew in size, before making a decision.

    There was no guarantee that surgery would actually find cancer.

    Memorial Sloan-Kettering says it looked at 2,000 patients whose prostates were removed during the last four years, after biopsies said they had cancer.

    But in more than 30% of the cases, the prostate removed either had microscopic amounts that weren't life-threatening, or no cancer at all.


    Dr. Scardino says that in some cases, cells removed in biopsies were cancerous, but the rest of the prostate appeared cancer-free.

    Ten years ago, the number of people who had their prostates removed - only to learn the amount of cancer wasn't life-threatening - was between 10% to 15%.

    The rate has risen because more men are having biopsies that indicate they may need treatment, Dr. Scardino says.

    Mr. MacMahon says his confusion only deepened.

    He underwent a test called endorectal magnetic resonance imaging, or eMRI.

    Using probes put in the rectum, the test takes an image of the inside of the prostate, trying to determine the extent and location of the cancer.

    Doctors told Mr. MacMahon they saw a spot that hadn't turned up in his two biopsies.

    They thought it could be an additional tumor.

    This was his greatest fear, Mr. MacMahon says - that the biopsies had missed a more extensive tumor growing somewhere else.

    But when he read research papers about the technique, they noted the eMRI test, a nascent technology, had a high false-positive rate.

    Dr. Scardino acknowledged the spot it found could just be a shadow.

    "Now they're talking about surgery based on something that could be a tumor or could be a shadow, they didn't really know," Mr. MacMahon says.

    On the other hand, he thought, "here was another test coming up on the wrong side. How many more tests did I have to do before I decided what to do?"

    Mr. MacMahon's insurer covered most of the costs of his testing.

    But he estimates he spent $10,000 out-of-pocket this year on his share of test and consultation costs, nutritional supplements, and $2,000 for a DNA test to insure that the Memorial Sloan-Kettering tissue sample was his and hadn't been inadvertently mixed up with someone else's tissue.

    Dr. Scardino told Mr. MacMahon he had operated on only one prostate-cancer patient as young as him, a 32-year-old who had also survived testicular cancer.

    In August, while Mr. MacMahon was taking a train to Baltimore for another medical consultation, the patient called him.

    The man reassured Mr. MacMahon he had made a full recovery - and, using sperm he had banked before his operation, had fathered two children since the surgery.

    The conversation left him "feeling optimistic," Mr. MacMahon recalls.

    In Baltimore, he met with Patrick C. Walsh, who for three decades led the Department of Urology at the Johns Hopkins Hospital and pioneered radical prostatectomy surgery.

    Dr. Walsh felt Mr. MacMahon's PSA test results were a signal something was going wrong.

    He thought Mr. MacMahon should have surgery.

    "In a man his age, no matter how much cancer there is, it's going to progress," says Dr. Walsh.

    "If we wait too long to treat it, we may overshoot and miss the window of curability."

    But Dr. Walsh wanted the Hopkins pathologist to look at the slides from Mr. MacMahon's biopsy before he arrived at a final conclusion.

    When Mr. MacMahon got the Hopkins pathologist's report a few weeks later, "It sent me through the roof," he says.

    Mr. MacMahon's voice had a note of frustration as he read what he refers to as "the disclaimer" paragraph in the report.

    In cases similar to his, the report stated, about 50% of the prostates removed had minuscule amounts of cancer.

    "They're basically saying that they might take out my prostate," Mr. MacMahon concluded, "and find nothing."

    Dr. Walsh says that could happen.

    But he felt that in Mr. MacMahon's case, it was more likely that they would find more cancer than the trace amounts that had shown up in his biopsies.

    Mr. MacMahon's younger brother, Doug, advised him to take his time before deciding about surgery.

    Against the wishes of their mother, Doug MacMahon refused to take a PSA test after his brother was diagnosed.

    He says he didn't want to find himself in a similar dilemma.

    The brothers had grown up down the street from four cousins, who Mr. MacMahon said were so close he considered them like sisters.

    They spent every summer together at their grandmother's beach house in Galveston.

    Every year, they traveled as a group to a ranch overlooking a national park in Texas and went hiking.

    At the age of 19, one of the cousins was diagnosed with advanced Hodgkin's disease after finding a lump in her neck.

    Mr. MacMahon, who was spending his junior year abroad at the time, flew back from Spain immediately to accompany her to chemotherapy treatments.

    After she finished treatment, she gave Mr. MacMahon a picture of the two of them, taken right before she cut off her hair and started chemotherapy.

    Today, it sits prominently on a table in his apartment.

    As he weighed his own options, he looked frequently at that picture.

    His cousin survived, and now has a child of her own.

    "With my sister, the path was so clear," says Stephanie Teleki, another of Mr. MacMahon's cousins.

    "But with John, I'm ambivalent. When all this started, I was really in the camp of 'you're young, let's change your diet and watch it and not rush because it seems like there isn't enough information about cancers caught this early.' "

    But, she adds, "little by little, fear eats away at you."

    Mr. MacMahon says knowing he had cancerous cells inside his body, even in a tiny amount, prompted him to make changes.

    He increased his workouts to six times a week, including weight training with a personal trainer. He went running several times a week.

    His cousin recommended a nutritionist who worked with cancer patients, and he started carrying a tackle box filled with 30 vitamins he took throughout the day.

    He drank green tea, ate more soy, fruits, and vegetables, and drank fruit smoothies at his desk.

    Even as it proved difficult to understand what was happening inside his body, he could see the changes on the outside, as his upper body became more muscular.

    Last month, he decided to get a third biopsy.

    His mother, Candace, questioned the choice.

    From the start, she thought that he should get surgery right away.

    At the age of 34, she had a hysterectomy.

    "Life moves on," she says.

    She felt postponing surgery until the disease became active wouldn't allow her son to ever put it behind him.

    "I wanted John to think in terms of the greater picture of his life," she says.

    "I don't believe in centering your life on illness."

    Mr. MacMahon recognized he was delaying a decision by having another biopsy.

    Dr. Walsh warned that scar tissue forms after each biopsy, which can make it more difficult to separate the prostate from surrounding nerves if he pursued surgery.

    The biopsy, which involves having a needle inserted through the rectum to get tissue samples, is painful.

    He would have to wait at least six weeks for his prostate to heal before he could have surgery, if he chose that route.

    He also consulted a colleague of his father's, Thomas M. Wheeler, interim chair of the pathology department at Houston's Baylor College of Medicine.

    When Dr. Wheeler read the slides, he didn't just give his assessment of the amount of cancer he saw, but set the results in the wider context of his life.

    "John is in the marketplace for a suitable mate, and this is going to have a bearing on whether he is considered damaged goods," Dr. Wheeler says.

    "He may be more appealing to a woman who knows he's cured of prostate cancer than if he keeps his prostate and has to say, 'by the way, I have prostate cancer, but we don't think it's threatening.' "

    Mr. MacMahon says he realized cancer would be a topic in any future relationship, and a successful surgery "would make that conversation easier."

    Still, sometimes it seemed impossible to imagine he had cancer. He felt great.

    The night before the third biopsy, he lifted weights, then went for a run.

    "I just want to see if there's more in there, if more than one of the 12 samples comes back positive for cancer," he said after returning from his workout.

    Late last month, Mr. MacMahon and his parents gathered in Dr. Scardino's office to discuss the biopsy results.

    Coming directly from work, Mr. MacMahon wore a blue shirt, a tie, khaki pants, and loafers. His parents, who are divorced, sat across from him.

    His mother refused to take off her coat, her arms tightly clenched around her purse.

    Dr. Scardino opened up Mr. MacMahon's file, and said, "We have what is so often troubling - conflicting data."

    The latest biopsy didn't reveal much that was new.

    He had a small amount of low-grade cancer in one of the samples.

    It did result in a bit of good news: the MRI result turned out to be a false positive.

    "The area we were worried about was probably not cancer, but a shadow," Dr. Scardino said.

    The real issue was that Mr. MacMahon's PSA level in his blood test was still elevated.

    That indicated the possibility of more cancer than the trace amount they had found in the biopsies.

    For a man his age, a PSA score of less than 1 is normal, Dr. Scardino says.

    Mr. MacMahon's level in January when he got sent for his first biopsy was 3.1.

    There were signs of some pre-malignant changes in another area of his prostate, but the cluster of cells was so small the pathologist couldn't make a definite diagnosis.

    "We're dealing with a very, very early cancer," he told the family.

    Dr. Scardino said there were two options.

    "You can say you have cancer and it won't go away. If you're going to operate, pick a time, do it, and move on. Or you can say it's cancer, but it's small, you're young, and if we could wait three or five years without treating, great, you've had a chance to live through another phase of life."

    Mr. MacMahon sat without speaking for a moment.

    "So it's up to me to decide," he finally said.

    His father, taking notes, looked up and asked about the risks of waiting.

    Dr. Scardino estimated that if Mr. MacMahon postponed treatment for five years, there was a 5% reduction in the chance that surgery would cure him.

    "The wisest thing to do is be treated," he said.

    His mother strongly favored surgery.

    Even if he could bank sperm for future use, she was sad that surgery might leave her son infertile.

    "It's a door that will close, and it's a pretty final door," she says.

    But when he asked the doctor about the possibility of delaying treatment until he was 40, she didn't wait for the answer.

    "There is no way you are waiting until you are 40," she told her son.

    After the meeting, Dr. MacMahon continued to agonize.

    He thought the chances of the cancer harming his son in the next five years were small.

    If the decision had been about him, he says he would wait. But he felt differently about his son.

    "I don't want him to take the chance," he said.

    Dr. Scardino and other researchers recently published a risk-assessment profile to help men decide whether to delay treatment.

    According to that profile, there was an 80% likelihood Mr. MacMahon had a small cancer that wasn't life-threatening at the moment.

    "The problem is you want to be 99% sure before you recommend that someone his age do nothing," Dr. Scardino says.

    "The price you pay for being wrong is very high."

    After listening to the doctor tick off the information they had, Mr. MacMahon said, "I wish I had more data."

    But when he went back to work, he says it struck him that he made choices based on limited data every day.

    Since his diagnosis, "I have been living every day like it might be my last," he says.

    He wanted to find a way to make cancer as normal a part of his life as possible.

    The day after Thanksgiving, he went for a run.

    Later, he joined his parents, his brother and his sister-in-law at a Manhattan restaurant.

    At the table, he told his family what he had decided.

    That morning, he said, he signed up to compete in a triathlon to be held in New York City in June.


    Then he called Dr. Scardino to tell him he would have surgery in August.

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