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http://www.nytimes.com/2003/01/08/health/08CANC.html?tntemail0

Young Survivors of Cancer Battle Effects of Treatment

By MARY DUENWALD and DENISE GRADY

HILADELPHIA — Handing a deck of cards to Sarah Ludwig, the psychologist said, "I want you to put the cards in order by suit, but keep in a separate pile those cards with the letter T in their names."

Sarah, 15, planned her strategy and, as the psychologist clicked a stopwatch, began sorting.

Ten years ago here at Children's Hospital of Philadelphia, Sarah was treated for leukemia, receiving an intensive two-year course of chemotherapy and steroids.

Today, she is free of the disease, but, possibly as a result of the treatment, she has an impaired attention span and other learning disabilities. Her work with the psychologist is part of a 20-week experimental program intended to help improve her concentration and performance in school.

Many other patients who, like Sarah, were treated for cancer at a very young age have found that the cure may come at a price: chemotherapy and radiation given early in life can have effects on both body and mind.

Often, the physical problems are treatable. Now, doctors and psychologists are also starting to address the learning difficulties, as increasing numbers of young cancer survivors worry about school grades, college admissions and career prospects — concerns about a future that would have seemed an unimaginable luxury a generation ago.

"Survival from childhood leukemia — the most common malignancy of childhood — is something of a medical marvel that I think the average person doesn't appreciate," said Dr. Robert Butler, a psychologist at Oregon Health and Science University who created the program in which Sarah is enrolled. "In the 1960's and early '70's, cancer was a death sentence. There was a 90 percent probability that the child was going to die. Now, there's about an 80 percent chance that the child will be cured. It's turned around practically 180 degrees," Dr. Butler said.

Survivors of childhood cancer number about 250,000 in the United States, and their ranks are growing steadily because of aggressive and effective treatments. Doctors are able to cure most cancers diagnosed in children and teenagers, 11,000 to 12,000 cases a year, Dr. Butler said.

Over all, cure rates in adults are considerably lower, with only 62 percent living 5 years or more. Dr. Paul A. Meyers, vice chairman of pediatrics at Memorial Sloan Kettering Cancer Center in Manhattan, cited several reasons why children with cancer fared better than adults.

For one, he said, since the 1950's, 85 percent of children with cancer — as opposed to only 2 percent of adults — have been treated in clinical trials, which have been proved to offer the best care.

In addition, Dr. Meyers said, the types of cancer that affect children tend to be more treatable than those in adults, and children are better able than adults to tolerate intensive treatment.

But the treatments can have lingering side effects. Doctors have known for about 20 years that chemotherapy and radiation administered early in life can cause health problems, post-traumatic stress and learning disabilities.

Dr. Charles A. Sklar, director of a program for childhood cancer survivors at Memorial Sloan Kettering, said that the physical ailments confronting the young survivors might include stunted growth, low thyroid function, kidney problems, infertility, heart and lung disorders and even new cancers.

Most of those illnesses can be treated, he said. But treatments for the learning disorders remain experimental.

The likelihood that a childhood cancer survivor will develop such disorders depends on the child's age at the time of treatment and the intensity of the treatment, according to Dr. Pim Brouwers, a pediatric neuropsychologist at Texas Children's Cancer Center in Houston.

Patients younger than 5 seem most vulnerable. Dr. Butler said: "We used to think they would be the most likely to recover, because their brains have greater plasticity. But the youngest children actually take a bigger hit from the treatments."

Children who have brain tumors — the second most prevalent form of childhood cancer, after leukemia — are at greater risk than those with other cancers. The tumor can damage brain tissue, Dr. Brouwers said, and the treatment, typically radiation directed at the head and spinal cord, can damage neurons.

Doctors can minimize the damage by using only the lowest possible doses of radiation, said Dr. Anna T. Meadows, a pediatric oncologist at Children's Hospital of Philadelphia.

Dr. Butler estimated that as many as 90 percent of children who had received radiation to the brain and spinal cord had some degree of impairment. Young patients like Sarah with acute lymphoblastic leukemia are often treated with chemotherapy alone. The drugs are often injected into the space containing the brain and spinal cord. Many of these children do not develop any cognitive problems, Dr. Meadows said. And those who do, studies show, are likely to be less impaired.

About 30 percent of children who have received this chemotherapy end up with learning or concentration problems, Dr. Butler said. Such problems are also found among an undetermined number of children who have not had cancer, he noted.

Sarah's problems were relatively mild compared with those of children who received radiation. And though experts cannot say for certain that chemotherapy caused her problems, Sarah's experience follows the pattern of other patients in her age group, according to Dr. Anne E. Kazak, the director of psychology at Children's Hospital of Philadelphia and a researcher in Dr. Butler's study.

Radiation and chemotherapy can damage the cells of the basal ganglia, a section of the brain involved in attention functions, Dr. Brouwers said. The problems often do not show up until three years after the children have finished treatments, studies show, because the brain cells die off slowly.

"It's tough on the kids and tough on parents," Dr. Brouwers said. "They're told the disease is gone, and then after five years, the kid is failing in school. And it just seems like it's never over."

The trauma of cancer itself can contribute to the problem, many doctors and parents believe.

"Sarah repeated kindergarten because she missed a lot of school for her treatments," Sarah's mother, Mary Ludwig, said. "It's always seemed as if she just never caught up."

Throughout elementary school and middle school, Sarah had noticeable difficulty paying attention and comprehending concepts that other children picked up easily, Mrs. Ludwig said: "There was just always something that she couldn't grasp."

Dr. Butler's program, which consists of 20 two-hour sessions, tries to teach techniques for focusing and organizing thoughts — skills other children use without realizing it. The teaching methods are borrowed from programs created to help people recover from strokes and other brain injuries.

At the session that Sarah sorted the cards, the psychologist, Dr. Merritt M. Jensen, asked her, "How can you help yourself concentrate on this?"

"I could make a key," Sarah suggested, consulting the list of strategies that she and Dr. Jensen began compiling in their first five sessions. Sarah picked up her pencil and wrote the list of "T" cards on a nearby pad: 2's, 3's, 8's and 10's.

Dr. Jensen started a stopwatch as Sarah began sorting. In less than two minutes, she was finished.

"I could do a better job than that," Sarah said, her shoulders dropping."I was trying to go too fast."

Dr. Jensen examined the piles. "You caught 12 of the T cards and only missed 4," she said. "To me, that's good work."

By playing the card game, Sarah was practicing simple concentration techniques and learning to think about strategies, like making written keys and monitoring her own speed and attention.

"If she can practice and talk about the skills she needs to develop, I'm hoping they can become ingrained," Dr. Jensen said.

Children in the program are instructed to work with pencil and paper on number problems and word puzzles. They play games like Uno and Mastermind that require concentration and memory skills. Homework is also incorporated into the training.

Dr. Butler and his colleagues at seven hospitals across the country have been testing the program for almost three years. To be eligible for the training, children must be at least a year beyond their cancer treatment, and they must demonstrate problems in perception and concentration.

The researchers intend to use the techniques with more than 100 children by midyear. These subjects will be compared with a somewhat smaller group of cancer survivors who receive no training for six months. The children in the control group are tested at the start and the end of the six-month period, and then are also offered a chance to take the training.

At best, however, the problems that the young cancer survivors experience with concentration and learning will diminish, not disappear, Dr. Kazak said. And other learning problems are likely to persist. A pilot study of the training Dr. Butler conducted in 1995 showed that while the children improved their concentration, their math skills remained about the same.

Ideally, Dr. Butler said, the training would help the children build new brain circuitry to replace what was damaged. This process, called functional reorganization, is known to occur in adults, he said, but is only theoretically possible in children.

After Sarah's session was done, Dr. Jensen worked for two hours with Danny Clark of Schwenksville, Pa. Danny, 12, had received chemotherapy for acute myelogenous leukemia when he was 3. Like Sarah, he had had trouble in school, especially after he reached the sixth grade.

"They kept saying `Pick up the pace,' and it was hard to get him to do that," his mother, Virginia Clark, said.

Danny had only two weeks left in the program, and seemed to have learned to be more organized, to pay attention and to work faster, she said. Mrs. Clark plans to keep practicing with him at home. "I really want to see this work," she said.

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