Son and Father Pierce Autism's Veil: The Work of Timothy Archibald - NYTimes.com

Neighbors, friends and teachers were dropping hints — some subtle, others pointed, even cruel — that something was not right with Timothy Archibald's first child, Elijah.

The little boy seemed hypnotized for hours by certain objects: doors, mechanical gears, the vacuum cleaner hose. He mimicked electrical sounds, knew the time schedule of the Bay Area Rapid Transit system by heart and had epic tantrums. Mr. Archibald, 43, an editorial and advertising photographer whose commercial clients include a maker of artificial limbs and Skittles candy, remembers thinking, "I can't raise this kid; I can't relate to him at all.''

The tension at home was all but unbearable. Every waking hour had to do with Eli, who was 5 at the time. Why was he this way? Why was he that way? Was he mentally ill? Should he be medicated? In retrospect, the evidence seems so unambiguous, particularly once there was a second child, Wilson, to compare Eli to. But nobody in the household had yet spoken aloud the word "autism.''

That was the moment when Mr. Archibald decided to look for his son, in the most literal sense of the word — through the lens of his camera.

"My feeling of utter frustration and powerless started this project,'' he said recently about "Echolilia," a limited-edition volume with 43 photographs, mostly of Eli. (It was published in June by Echo Press.) The title is derived from echolalia, a technical term for the copying of sounds and sentences common in children who suffer from some form of autism, who include verbal children like Eli who attend regular public schools. "I knew he was tuned differently," Mr. Archibald said, "and I needed to build a bridge, get inside his head, learn what made him tick.''

This would not be a standard documentary project in which he turned his camera on the boy at any and every opportunity, to chronicle his life. Nor would he stage and shoot standard portraits.

Instead, man and boy, father and son, would collaborate, in formal shooting sessions that rarely lasted more than 5 or 10 minutes but were regularly scheduled and initiated by an object or notion that interested Eli. It was Eli's idea to see if a very large manila envelope would fit over his head; Eli's idea to blow into one end of a vacuum cleaner hose and hold the other end to his ear to hear the whoosh. It was Eli's idea to see if he could curl up his body until it fit inside a clear plastic toy box, to flatten his features with a wide rubber band, to look through the wide end of a funnel that happened to be the same circumference as his face. "He has always fetishized objects,'' Mr. Archibald said. "They are iconic to him.''

With a digital camera, photographer and subject could examine each image immediately. Sometimes Eli would have an idea for a more interesting pose or setting. Mostly that was Mr. Archibald's job. He might suggest that they try the shot again at a different time of day or in a place with different light. The collaboration "satisfied something deep inside both of us," Mr. Archibald said. "We shared — I don't know what — mutual respect?''

Light mattered. And simple settings. And contrast. And composition. Take, for instance, the photo of Eli and the vacuum cleaner hose. It was on the living room floor when he came home from school one day because his mother had been cleaning. It riveted the boy. "This is cool," he told his father. "Let's make some photos." First, they went outside, where the light would be better. But Mr. Archibald didn't like the image of the boy seated, tube to his mouth and ear, amid the chalk scrawling on the driveway. They moved to the backyard. Mr. Archibald noted the dark expanse of dirt and wanted to see Eli's pale skin against that background. On an impulse, he said, he asked his son to take off his shirt.

One photograph juxtaposes a page of notes Mr. Archibald took when Eli's ailment was diagnosed with a child's bandage. It's meant to capture the specialness of this child, which exists side by side with the fact that he is a normal little boy who skins his knees. "I was looking for that push and pull,'' Mr. Archibald said, "the flux between the two.''

All the pictures are set at home, in El Sobrante, Calif., a working-class community in the East Bay, quite charmless with its unlandscaped lawns and commercial strips lined with muffler repair shops and the like. Why only at home? "That's where the tension was; that's where I was trying to be a parent and feeling I was doing such a bad job of it,'' Mr. Archibald said. "This is not about Eli in the world.''

The world will soon enough impinge, Mr. Archibald fears, when Eli, now 8 and in the third grade, hits middle school. For the moment, "quirkiness is accepted by the other kids,'' he said. "There is no social big boot to crush him yet.'' Mr. Archibald said Eli finds nothing embarrassing about the book, despite what he acknowledged might look like "feral" images to some viewers, including a number in which the boy is unclothed. "There is no adolescent body consciousness yet," Mr. Archibald said.

His wife, Cheri Stalmann, objected to the project at first. She worried that Eli was being exploited to serve her husband's need to make sense of his own suffering. Eventually, however, Mr. Archibald said she grew enthusiastic as she saw Eli's pleasure in the work and the results.

When the book was published, the rest of the family celebrated. Eli seemed uninterested at first. Then he asked for his own copy, to keep in his room. There, happily thumbing through it with his father these days, Eli will come upon photos taken as long as three years ago. "Oh, I forgot about that one,'' he says to his father. "Look how cool it is!"

http://lens.blogs.nytimes.com/2010/11/05/son-and-father-pierce-autisms-veil/

Autism Therapy Beginning at 6 Months - NYTimes.com

In the three years since her son Diego was given a diagnosis of autism at age 2, Carmen Aguilar has made countless contributions to research on this perplexing disorder.

She has donated all manner of biological samples and agreed to keep journals of everything she's eaten, inhaled or rubbed on her skin. Researchers attended the birth of her second son, Emilio, looking on as she pushed, leaving with Tupperware containers full of tissue samples, the placenta and the baby's first stool.

Now the family is in yet another study, part of an effort by a network of scientists across North America to look for signs of autism as early as 6 months. (Now, the condition cannot be diagnosed reliably before age 2.) And here at the MIND Institute at the University of California Davis Medical Center, researchers are watching babies like Emilio in a pioneering effort to determine whether they can benefit from specific treatments.

So when Emilio did show signs of autism risk at his 6-month evaluation — not making eye contact, not smiling at people, not babbling, showing unusual interest in objects — his parents eagerly accepted an offer to enroll him in a treatment program called Infant Start.

The treatment is based on a daily therapy, the Early Start Denver Model, that is based on games and pretend play. It has been shown in randomized trials to significantly improve I.Q., language and social skills in toddlers with autism, and researchers say it has even greater potential if it can be started earlier.

"What you ultimately might be doing is preventing a certain proportion of autism from ever emerging," said David Mandell, the associate director of the Center for Autism Research at the Children's Hospital of Philadelphia. "I'm not saying you're curing these kids, but you may be changing their developmental trajectory enough by intervening early enough that they never go on to meet criteria for the disorder. And you can't do that if you keep waiting for the full disorder to emerge."

Sally Rogers, a MIND Institute researcher who has been working with the Aguilars, said she faced several challenges in adapting the toddler therapy for infants.

Even normally developing babies cannot speak or gesture, let alone pretend. Instead, Ms. Rogers has parents focus on babbling and simple social interactions that occur in the normal routine of feeding, dressing, bathing and changing the baby.

"Patty-cake and peekaboo or tickle games, those are people games," she explained to Carmen and Saul Aguilar during their first session with their son Emilio at 7 months old. Ms. Rogers talked about the next 12 weeks and how they would focus on getting Emilio to exchange smiles, to respond to his name, to babble with them, starting with single syllables ("ma") and moving on to doubles ("gaga") and more complex combinations ("maga").

"Most babies come into the world with a built-in magnet for people," Ms. Rogers said. "One thing we know about autism is that it weakens that magnet. It's not that they're not interested, they have a little less draw to people. So how do we increase our magnetic appeal for his attention?"

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http://www.nytimes.com/2010/11/02/health/02autism.html?src=un&feedurl=http://json8.nytimes.com/pages/health/research/index.jsonp&pagewanted=all

The Patient’s Side of Lifesaving Treatments - NYTimes.com

Wiry, fair-haired and in his 60s, the patient had received a prostate cancer diagnosis a year earlier. When his doctors told him that surgery and radiation therapy were equally effective and that it was up to him to decide, he chose radiation with little hesitation.

But one afternoon a month after completing his treatment, the patient was shocked to see red urine collecting in the urinal. After his doctors performed a series of tests and bladder irrigations through a pencil-size catheter, he learned that the bleeding was a complication of the radiation treatment.

He recalled briefly hearing about this side effect three months earlier, but none of the reports he had been given or collected mentioned it, and once he had recovered from the angst of the emergency room and the doctor's office visits and the discomfort of the clinical work-up, he didn't give it more thought — until a few weeks later, when he started bleeding again.

By the time I met him, he was in the middle of his third visit to the hospital. "I feel like I'm tied to this place," he said. He showed me a plastic jug partly filled with urine the color of fruit punch, and he described a post-treatment life marked by fear of going to the bathroom and discovering blood. "If I had known that my life would be like this after radiation," he sighed, "I would have chosen the surgery."

Whether conducted at a laboratory bench or in clinical trials, medical research has long been driven by a single overriding goal — the need to find a cure. Usually referred to more modestly as a search for "the most effective treatment," this standard has served as both a barometer of success and a major criterion for funding. Most published studies are marked by a preponderance of data documenting even minor blips in laboratory values or changes in the size of a spot of cancer or area of heart muscle damage on specialized X-rays. Some studies bolster the apparent success of their results with additional data on societal effects like treatment costs or numbers of workdays missed.

Few studies, however, focus on the patient experience.

The result of all this emphasis on cure has been a nearly embarrassing richness of choice for patients with diabetes, heart disease, H.I.V. infections and even some cancers. The increasingly sophisticated treatment regimens that now make up medicine's armamentarium have transformed once life-threatening diseases into chronic ones, but in the process have given rise to a group of individuals who are caught in the unenviable position of living with an illness that never quite goes away. No longer forced to make once-in-a-lifetime life-or-death treatment decisions, they instead struggle each day with the side effects of the very treatments that keep them alive.

For many of these patients, the most important question becomes not "What treatment will allow me to live the longest?" but rather "Which treatment can I live with?"

Now, according to a paper published last month in the policy journal Health Affairs, the Patient-Centered Outcomes Research Institute, a new initiative mandated by the federal health care overhaul, may offer a chance to alter the prevailing winds of medical research so the needs of this growing segment of the patient population are addressed. With a 21-member board made up of individuals from both the public and private sectors, the institute has a mandate to set the agenda for research comparing treatments for common diseases and to finance the most important studies. But according to the paper's authors, the potential of such an enterprise will be fully realized only if the institute supports initiatives and strategies that place the patient experience not only front and center in research but also smack in the middle of the medical mainstream.

"To some extent, we've conquered death," said Dr. Albert W. Wu, lead author and a general internist and professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health in Baltimore. "Now we have people living with chronic illnesses, and how they experience quality of life every day has become an important part of how they are doing and whether the treatments are worthwhile."

To effectively capture the patient perspective, Dr. Wu and his co-authors propose making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection, in some cases requiring the information for reimbursement. For several months now, they have been incorporating data about patient experiences into routine medical practice at Johns Hopkins. Using a dedicated portal called PatientViewpoint.org, patients can, at the suggestion of their physicians, fill out surveys about their energy levels, social functioning, mental health, nausea and pain. The information is then handled like more traditional clinical testing; access is reserved for the patients themselves and their doctors.

Currently, the site is open only to patients diagnosed with breast or prostate cancer, but Dr. Wu and his colleagues hope that eventually all doctors will be able to order patient surveys that measure experiences like levels of pain, physical functioning or depression, proactively identifying results that are high or low, then reviewing those results with patients. And despite initial concerns that patients might feel overburdened by the questionnaires, most have been enthusiastic.

"Patients want to have more conversations with their physicians and other providers about these kinds of issues," Dr. Wu said. "Sometimes it's difficult to cover all this information during the medical encounter, and these surveys may be another opportunity to do that."

Not all clinicians or researchers, however, are eager to embrace patient-reported outcomes. Many have never received training in the research methods involved and are skeptical about the value of a discipline or drill that is unfamiliar. "This is considered to be squishy, soft stuff," Dr. Wu said. "It's still not something you can order on a laboratory slip."

Nonetheless, Dr. Wu is hopeful that the new Patient-Centered Outcomes Research Institute will provide more direction to all researchers, while establishing new and more comprehensive standards that require patient-reported and quality-of-life outcomes. "I think we have a real opportunity right now, and this institute has great potential to be a positive force in understanding how treatments work and what's effective and for whom," he said.

But he also cautioned: "We have to remember to include the patients. We have to include their perspective if we want to come up with evidence that they can really use to make better decisions for themselves about treatment and care."

http://www.nytimes.com/2010/11/04/health/views/04chen.html?pagewanted=print

Lung Cancer Deaths Reduced by CT Scans, Study Finds - NYTimes.com

Annual CT scans of current and former heavy smokers reduced their risk of death from lung cancer by 20 percent, a huge government-financed study has found. Even more surprising, the scans seem to reduce the risks of death from other causes as well, suggesting that the scans could be catching other illnesses.

The findings represent an enormous advance in cancer detection that could potentially save thousands of lives annually, although at considerable expense. Lung cancer will claim about 157,000 lives this year, more than the deaths from colorectal, breast, pancreatic and prostate cancers combined. Most patients discover their disease too late for treatment, and 85 percent die from it.

No screening method had proved effective at reducing mortality from the disease. Four randomized controlled trials done during the 1970s showed that chest X-rays, while they helped catch cancers at an earlier stage, had no effect on overall death rates. Since then, researchers have suggested that CT scans — which use coordinated X-rays to provide three-dimensional views — could detect lung tumors at an even earlier stage than X-rays.

"This is the first time that we have seen clear evidence of a significant reduction in lung cancer mortality with a screening test in a randomized controlled trial," said Dr. Christine Berg of theNational Cancer Institute.

Cancer doctors and others predicted that the study's results would soon lead to widespread use of CT scans, in particular for older smokers, who have a one in 10 chance of contracting lung cancer.

"These people are worried about lung cancer, and now there is an opportunity to offer them something," said Dr. Mary Reid, an associate professor of oncology at the Roswell Park Cancer Institute in Buffalo.

But health officials involved in the study refused to endorse widespread screening of current or former smokers, saying more analysis of the study's results is needed to further identify who benefited most. Such an analysis is months away. And they pointed out that the study offers no reassurance about the safety of smoking or the advisability of CT scans for younger smokers or nonsmokers.

"No one should come away from this thinking that it's now safe to continue to smoke," said Dr. Harold E. Varmus, director of the National Cancer Institute.

Patients wishing to get a CT lung screen will most likely have to pay the roughly $300 charge themselves, since few insurers pay for such scans unless an illness is suspected. The federal Medicareprogram will soon reconsider paying for such screens, a Medicare official said.

The study, called the National Lung Screening Trial, was conducted by the American College of Radiology Imaging Network and the cancer institute. It involved more than 53,000 people ages 55 to 74 who had smoked at least 30 pack-years — one pack a day for 30 years or two packs a day for 15 years. Ex-smokers who had quit within the previous 15 years were included in the group.

Each was given either a standard chest X-ray or a low-dose CT scan at the start of the trial and then twice more over the next two years. Participants were followed for up to five years. There were 354 lung cancer deaths among those who received CT scans and 442 among those who got X-rays. The $250 million study, which began in 2002, was paid for by the cancer institute and carried out at 33 sites.

Its preliminary results were announced days after an independent monitoring board determined that the benefits of CT scans were strong enough to stop the trial. The study will be published in the coming months.

The study found that for every 300 people who were screened, one person lived who would otherwise have died during the study. But one-quarter of those given CT scans were found to have anomalies, nearly all of which were benign. These false signals generally led to more worry, more CT scans and sometimes to lung biopsies and thoracic surgery.

"There are economic, medical and psychological consequences of finding these abnormalities," Dr. Varmus said.

Deaths due to all causes declined by 7 percent among study participants who received CT scans, suggesting the tests helped to detect other life-threatening diseases besides lung cancer.

More ...

http://www.nytimes.com/2010/11/05/health/research/05cancer.html?_r=2&hp

ScienceBlogs : Medicine & Health

http://scienceblogs.com/channel/medicine/?utm_source=globalChannel&utm_medium=link

Study: Alcohol more lethal than heroin, cocaine - Washington Post

LONDON -- Alcohol is more dangerous than illegal drugs like heroin and crack cocaine, according to a new study.

British experts evaluated substances including alcohol, cocaine, heroin, ecstasy and marijuana, ranking them based on how destructive they are to the individual who takes them and to society as a whole.

Researchers analyzed how addictive a drug is and how it harms the human body, in addition to other criteria like environmental damage caused by the drug, its role in breaking up families and its economic costs, such as health care, social services, and prison.

Heroin, crack cocaine and methamphetamine, or crystal meth, were the most lethal to individuals. When considering their wider social effects, alcohol, heroin and crack cocaine were the deadliest. But overall, alcohol outranked all other substances, followed by heroin and crack cocaine. Marijuana, ecstasy and LSD scored far lower.

The study was paid for by Britain's Centre for Crime and Justice Studies and was published online Monday in the medical journal, Lancet.

Experts said alcohol scored so high because it is so widely used and has devastating consequences not only for drinkers but for those around them.

"Just think about what happens (with alcohol) at every football game," said Wim van den Brink, a professor of psychiatry and addiction at the University of Amsterdam. He was not linked to the study and co-authored a commentary in the Lancet.

When drunk in excess, alcohol damages nearly all organ systems. It is also connected to higher death rates and is involved in a greater percentage of crime than most other drugs, including heroin.

But experts said it would be impractical and incorrect to outlaw alcohol.

"We cannot return to the days of prohibition," said Leslie King, an adviser to the European Monitoring Centre for Drugs and one of the study's authors. "Alcohol is too embedded in our culture and it won't go away."

King said countries should target problem drinkers, not the vast majority of people who indulge in a drink or two. He said governments should consider more education programs and raising the price of alcohol so it isn't as widely available.

Experts said the study should prompt countries to reconsider how they classify drugs. For example, last year in Britain, the government increased its penalties for the possession of marijuana. One of its senior advisers, David Nutt - the lead author on the Lancet study - was fired after he criticized the British decision.

"What governments decide is illegal is not always based on science," said van den Brink. He said considerations about revenue and taxation, like those garnered from the alcohol and tobacco industries, may influence decisions about which substances to regulate or outlaw.

"Drugs that are legal cause at least as much damage, if not more, than drugs that are illicit," he said.

http://www.washingtonpost.com/wp-dyn/content/article/2010/10/31/AR2010103103887.html

Lancet:

Background

Proper assessment of the harms caused by the misuse of drugs can inform policy makers in health, policing, and social care. We aimed to apply multicriteria decision analysis (MCDA) modelling to a range of drug harms in the UK.

Methods

Members of the Independent Scientific Committee on Drugs, including two invited specialists, met in a 1-day interactive workshop to score 20 drugs on 16 criteria: nine related to the harms that a drug produces in the individual and seven to the harms to others. Drugs were scored out of 100 points, and the criteria were weighted to indicate their relative importance.

Findings

MCDA modelling showed that heroin, crack cocaine, and metamfetamine were the most harmful drugs to individuals (part scores 34, 37, and 32, respectively), whereas alcohol, heroin, and crack cocaine were the most harmful to others (46, 21, and 17, respectively). Overall, alcohol was the most harmful drug (overall harm score 72), with heroin (55) and crack cocaine (54) in second and third places.

Interpretation

These findings lend support to previous work assessing drug harms, and show how the improved scoring and weighting approach of MCDA increases the differentiation between the most and least harmful drugs. However, the findings correlate poorly with present UK drug classification, which is not based simply on considerations of harm.

http://www.lancet.com/journals/lancet/article/PIIS0140-6736(10)61462-6/fulltext

Kaiser Health News

Kaiser Health News (KHN) is a nonprofit news organization committed to in-depth coverage of health care policy and politics.

http://www.kaiserhealthnews.org/

HealthDay - News for Healthier Living

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Physician's Briefing:

http://www.physiciansbriefing.com/

StumbleUpon - Discover - Health

StumbleUpon helps you discover and share great websites. As you click Stumble!, we deliver high-quality pages matched to your personal preferences. These pages have been explicitly recommended by your friends or one of 8 million+ other websurfers with interests similar to you.

http://www.stumbleupon.com/discover/health/

Health and Medical News: MedlinePlus

MedlinePlus is the National Institutes of Health's Web site for patients and their families and friends. Produced by the National Library of Medicine, it brings you information about diseases, conditions, and wellness issues in language you can understand. MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, for free.

You can use MedlinePlus to learn about the latest treatments, look up information on a drug or supplement, find out the meanings of words, or view medical videos or illustrations. You can also get links to the latest medical research on your topic or find out about clinical trials on a disease or condition.

http://www.nlm.nih.gov/medlineplus/healthnews.html

mobihealthnews

MobiHealthNews chronicles the healthcare sector's adoption of mobile technology: A convergence of two industries that is shaping the future of how healthcare is delivered to the patient on-the-go, at home and at their place of care.

MobiHealthNews offers a combination of breaking news, exclusive interviews, live event coverage and industry commentary to its growing readership of hospital administrators, healthcare service providers, physicians, nurses and the industry players designing, developing and deploying the wireless services that are transforming healthcare today. Healthcare executives rely on daily reports from MobiHealthNews to track innovations and to define sustainable business models for this emerging wireless health industry.

MobiHealthNews is both a daily, online news portal and free, weekly newsletter.

http://mobihealthnews.com/

Top 10 Free iPhone Medical Apps for Health care Professionals | iMedicalApps

If you're a physician, medical student, or in any other health care related field, trying to find the best free medical apps for the iPhone is a hassle.  Apps such as "Dream Meanings", "Relax Ocean waves", and "Stool Scanner Lite" dominate the Top Free Medical Apps list in the App Store. 

Our top 10 iPhone medical apps list contains no such app, and this isn't a re-hash of the top downloaded free medical apps either.  Rather, this list contains the top 10 free iPhone medical apps health care professionals and students can actually use on a day to day basis.

Also, remember to "Like" us on our Facebook fan page – we give our tons of free medical apps on our Facebook wall and you can find interesting commentary there as well:http://www.facebook.com/iMedicalApps

http://www.imedicalapps.com/2010/02/top-10-free-iphone-medical-apps-for-health-care-professionals/

Kresge Library - Mobile Resources

Medical RSS feeds, podcasts, apps

http://www.scripps.edu/library/open/shmobile.html

The Riddle of Cancer Relapse - NYTimes.com

In the winter of 1999, a 49-year-old psychologist was struck by nausea —a queasiness so sudden and strong that it seemed as if it had been released from a catapult.

More puzzled by her symptoms than alarmed — this nausea came without any aura of pain — she saw her internist. She was given a diagnosis of gastroenteritis and sent home to bed rest and Gatorade.

But the nausea persisted, and then additional symptoms appeared out of nowhere. Ghostly fevers came and went. She felt perpetually full, as if she had just finished a large meal. Three weeks later, she returned to the hospital, demanding additional tests. This time, a CT scan revealed a nine-centimeter solid mass pushing into her stomach. Once biopsied, the mass was revealed to be a tumor, with oblong, spindle-shaped cells dividing rapidly. It was characterized as a rare kind of cancer called a gastrointestinal stromal tumor, or GIST.

A surgical cure was impossible: her tumor had metastasized to her liver, lymph nodes and spleen. Her doctors halfheartedly tried some chemotherapy, but nothing worked. "I signed my letters, paid my bills and made my will," the patient recalled. "I was told to go home to die."

In June, several months after her diagnosis, she stumbled into a virtual community of co-sufferers — GIST patients who spoke to one another online through a Listserv. In 2001, word of a novel drug called Gleevec began to spread like wildfire through this community. Gleevec was the exemplar of a brand-new kind of cancer medicine. Cancer cells are often driven to divide because of mutations that activate genes crucial to cell division; Gleevec directly inactivated the mutated gene driving the growth of her sarcoma, and in early trials was turning out to be astonishingly effective against GIST.

The psychologist pulled strings to enroll in one of these trials. She was, by nature, effortlessly persuasive, and her illness had made her bold. She enrolled in a Gleevec trial at a teaching hospital. A month later, her tumors began to recede at an astonishing rate. Her energy reappeared; her nausea vanished. She was resurrected from the dead.

Her recovery was a medical miracle, emblematic of a new direction in cancer treatment. Medicine seemed to be catching up on cancer. Even if no cure was in sight, there would be a new generation of drugs to control cancer, and another when the first failed. Then, just short of the third anniversary of her unexpected recovery, cancer cells suddenly began multiplying again. The dormant lumps sprouted back. The nausea returned. Malignant fluid poured into the cisterns of her abdomen.

Resourceful as always, she turned once more to the online community of GIST patients. She discovered that there were other drugs — second-generation analogues of Gleevec — in trial in other cities. Later that year, she enrolled in one such trial in Boston, where I was completing my clinical training in cancer medicine.

The response was again striking. The masses in her liver and stomach shrank almost immediately. Her energy flowed back. Resurrected again, she made plans to return home. But the new drug did not work for long: within months she relapsed again. By early winter, her cancer was out of control, growing so fast that she could record its weight, in pounds, as she stood on the hospital's scales. Eventually her pain reached a point when it was impossible for her to walk.

Toward the end of 2003, I met her in her hospital room to try to reconcile her to her medical condition. As usual, she was ahead of me. When I started to talk about next steps, she waved her hand and cut me off. Her goals were now simple, she told me. No more trials. No more drugs. She realized that her reprieve had finally come to an end. She wanted to go home, to die the death that she expected in 1999.

The word "relapse" comes from the Latin for "slipping backward," or "slipping again." It signals not just a fall but another fall, a recurrent sin, a catastrophe that happens again. It carries a particularly chilling resonance in cancer — for it signals the reappearance of a disease that had once disappeared. When cancer recurs, it often does so in treatment-resistant or widely spread form. For many patients, it is relapse that presages the failure of all treatment. You may fear cancer, but what cancer patients fear is relapse.

Why does cancer relapse? From one perspective, the answer has to do as much with language, or psychology, as with biology. Diabetes and heart failure, both chronic illnesses whose acuity can also wax and wane, are rarely described in terms of "relapse." Yet when a cancer disappears on a CT scan or becomes otherwise undetectable, we genuinely begin to believe that the disappearance is real, or even permanent, even though statistical reasoning might suggest the opposite. A resurrection implies a previous burial. Cancer's "relapse" thus implies a belief that the disease was once truly dead.

But what if my patient's cancer had never actually died, despite its invisibility on all scans and tests? CT scans, after all, lack the resolution to detect a single remnant cell. Blood tests for cancer also have a resolution limit: they detect cancer only when millions of tumor cells are present in the body. What if her cancer had persisted in a dormant state during her remissions — effectively frozen but ready to germinate? Could her case history be viewed through an inverted lens: not as a series of remissions punctuated by the occasional relapse, but rather a prolonged relapse, relieved by an occasional remission?

In fact, this view of cancer — as tenaciously persistent and able to regenerate after apparently disappearing — has come to occupy the very center of cancer biology. Intriguingly, for some cancers, this regenerative power appears to be driven by a specific cell type lurking within the cancer that is capable of dormancy, growth and infinite regeneration — a cancer "stem cell."

If such a phoenixlike cell truly exists within cancer, the implication for cancer therapy will be enormous: this cell might be the ultimate determinant of relapse. For decades, scientists have wondered if the efforts to treat certain cancers have stalled because we haven't yet found the right kind of drug. But the notion that cancers contain stem cells might radically redirect our efforts to develop anticancer drugs. Is it possible that the quest to treat cancer has also stalled because we haven't even found the right kind of cell?

More ...

http://www.nytimes.com/2010/10/31/magazine/31Cancer-t.html?ref=magazine&src=me&pagewanted=print

Taking Genetic History to the Grave - NYTimes.com

Has the death of a loved one left you wondering about your own genetic risk for cancer?

New research suggests that patients often take clues about a family's hereditary cancer risk to the grave because genetic counseling typically isn't part of end-of-life discussions or care.

Researchers at Virginia Commonwealth University Massey Cancer Center interviewed 43 dying cancer patients and determined that nine of them, or about 21 percent, were good candidates for genetic counseling based on various risk factors that suggested hereditary colon, breast, lung, pancreatic or ovarian cancer. Although the counseling most likely would not have made a difference in their treatment, the knowledge of hereditary risk would be useful to surviving family members, the researchers noted.

None of the eligible patients, however, had received counseling to discuss their genetic legacy, according to the study, which was published in The Journal of Genetic Counseling. Most of the patients weren't well informed about genetic counseling, and many hadn't heard of DNA banking, which allows storage of blood and tissue samples for future testing after a patient has died.

It's thought that about 5 to 10 percent of cancers have a strong hereditary component, said the study's lead author, John M. Quillin, an assistant professor in the department of human and molecular genetics.

"Genetic testing is typically done on a blood sample," Dr. Quillin said. "We lose opportunities to get that blood sample after patients die, which has implications for family members. It's for folks who are now wondering, 'Was there something in my mother's DNA that has implications for me?' "

Dr. Quillin notes that most people who have cancer don't need genetic testing. But hereditary cancer is suspected when someone is diagnosed with cancer at a younger age, such as premenopausal breast cancer or colon cancer before age 50. A person who has been diagnosed with more than one type of cancer or who has two or three relatives with a similar cancer also may be a candidate for genetic testing.

Dr. Quillin notes that a conversation about genetic testing can leave patients feeling empowered and pleased that their illness may lead to better screening or treatments for their loved ones.

"From a medical standpoint, there's a window of opportunity for getting information for surviving relatives," he said. "But there could be other benefits. There have been studies that suggest folks near the end of life feel that they want to leave a good legacy for their family members, so if finding their genetic legacy helps their family members out, they may be interested in pursuing this. There are some psychosocial and family benefits to talking about this."

Genetic testing typically is paid for by insurance companies only when it can directly influence a patient's treatment. DNA banking of blood and tissue samples usually is not covered. The cost of DNA banking ranges from $50 to $350, according to the National Society of Genetic Counselors.

The society's Web site has more information about genetic counseling. Andthe GeneTests.org Web site, financed by the National Institutes of Health, has a list of DNA banking labs as part of its laboratory directory.

http://well.blogs.nytimes.com/2010/10/28/taking-genetic-history-to-the-grave/