Raising the Odds for Kids Who Survive Brain Tumors

Growing up in Red Bank, N.J., Lucy Smith was an avid gymnast who excelled in school, going directly from first grade into third.

But she started having bad headaches, and after being referred to a neurologist, Lucy, then 12, was diagnosed with a brain tumor in February 1993.

During the next year, Lucy would travel with her family to Children's Hospital of Philadelphia for brain surgery, radiation treatments and chemotherapy.

She remembers having a mold made for her body for radiation therapy. She was placed in a dark room and left alone as the door closed with a loud "thunk" before a red light came on to indicate the start of the treatment.

She also remembers the soreness in her throat and a burning sensation in her chest when the procedures ended.

Lucy survived her tumor, attributing her successful recovery to a combination of good treatment and a sense of humor.

But survival didn't mean a return to the way things were.

"Before having the tumor and surgery and radiation I was really good in math, science and verbal," said Lucy. "Afterwards, it's like my thought processes changed."

In addition to going from "one of the students who never studied for tests" to "pretty average," Lucy said she had to relearn how to write -- even switching from lefty to righty -- and still has little short-term memory.

She's not alone in her struggles. A Finnish study released in this week's issue of the journal Neurology is the latest in a growing body of medical literature that sheds light on the problems that survivors of childhood tumors face.

Researchers used a national childhood cancer registry and a database of students' grades to learn how childhood brain tumor survivors fared academically compared to their peers.

They found that brain tumor survivors who had radiation treatments were likely, by the start of high school, to be behind their peers academically.

Balancing Illness With Cure

Findings like these are prompting researchers and treating physicians to consider not just whether a treatment will cure a patient, but how it will affect the patient's life down the line.

"We know that if you give less radiation and lower doses, then you'll have fewer problems, but we don't know whether those children will survive in equal numbers," said Dr. Anna Meadows, a pediatric oncologist involved in Lucy's care at Children's Hospital and the director of its highly regarded Cancer Survivorship Program.

Sentiments like that have lead to growing research into how to curb the aftereffects of brain tumors and their treatments.

"[Parents] need to be aware of the often inevitable late-effects of the tumor and its treatment, especially irradiation, which can compromise their child's achievements at school," said Dr. Päivi Lähteenmäki of Turku University, the principal author on the study.

At the same time, Lähteenmäki said that studies like his give hope that survivors can succeed with the right kind of assistance.

"The important message is that most of the children [94 percent] surviving a brain tumor are able to finish their comprehensive school at the normal age," he said.

In the past few decades, medical science has made drastic advances in the treatment of childhood cancers. According to a 2006 editorial in the New England Journal of Medicine, over 75 percent of children with cancer survive the illness and live into adulthood.

With help, Lucy was able to do just that. Unable to withstand the rigors of a full day at school, she was tutored by her mother, a certified teacher.

She finished eighth grade and moved on to high school with the rest of her class.

Other Interventions

"Now that we know they're having academic difficulties" medical professionals are asking "what can we do to make this better?" said Dr. Heather Conklin, a pediatric neuropsychologist at St. Jude Children's Research Hospital in Memphis.

As a result of the studies, Conklin said researchers are looking at using less aggressive therapies for less severe tumors, decreasing the intensities of treatments and considering interventions for survivors.

Since lack of attentiveness seems to be a leading cause of academic problems in these patients, she said, interventions that gave tumor survivors Ritalin seemed to help improve their academics and social skills.

Survivors of childhood tumors can expect other quality of life issues outside their academic lives, Conklin warned. These include difficulty with employment, relationships, and health and fertility problems.

Despite the very real likelihood of health problems -- a study in the New England Journal of Medicine last year found that two-thirds of childhood cancer survivors had at least one chronic health problem -- Lucy, who has a thyroid deficiency that has sapped her energy, said she spends little time dwelling on that.

She spends little time worrying what her past illness might mean for her future.

"You've got to go on living," she said. "I think about it occasionally, but you live each day as it comes."

She emphasized that surviving cancer and living well depend on attitude.

"Something I saw a lot in the hospital was that people who had a good sense of humor?they got better. The kids whose parents were wringing their hands all the time?their kids were in the hospital constantly."

Results May Vary

Dr. Charles Sklar, a pediatric endocrinologist at Memorial Sloan-Kettering Cancer Center in New York, cautioned that large studies like the Finnish one can lead to sweeping assumptions that don't match the full picture of childhood brain tumors.

"We know there are kids who do really well and there are kids who have lots of serious problems," he said. "[In this study] everyone looks like they are doing slightly below average, but in fact you have a huge range."

Sklar attributes the problem to the fact that the study didn't subdivide based on specific tumors and treatments.

Lucy has little question that she had one of the better outcomes.

"I think I'm doing pretty well," she said. "I was able to go to a really good college. I'm supporting myself. I have a really good job."

Now 26 and working as an information management officer for the federal government in northern Virginia, Lucy also shows how the averages can be very far off on an individual.

The Finnish study showed females who survived brain tumors having greater deficits than their male counterparts, and language skills suffering the most, reinforcing earlier findings.

But Lucy has earned both bachelor's and master's degrees and when she graduated from Lafayette College, she did so magna cum laude, having written a 50-page honors thesis.

In French.