Price of Cancer Therapy : Young Patients Face Learning, Fertility Problems in Later Years

When Bryan Stone fell to the bottom of his class in the first and second grades, his parents were bewildered.

The Newport Beach couple refused to believe that Bryan, who had conquered leukemia, lagged behind academically simply because he had earlier missed time from school while receiving chemotherapy treatment.

“We thought he was being lazy and not trying,” Bryan’s mother, Melinda, said. “He had been a smart baby, very coordinated.”

But when a neuropsychologist evaluated Bryan last year, he concluded that the boy’s learning disabilities--including concentration and memorization problems--probably stemmed from the intense chemotherapy he had received for three years, starting when he was 2 years old.

Bryan, now 11, is among an increasing number of young cancer survivors worldwide who are the victims of an irony: The radiation and chemotherapy that have saved an ever-greater number of young lives also produce such major side effects as learning disabilities caused by brain damage, stymied growth, weakened hearts and lungs, and loss of fertility.

Handicaps may persist through life, as Dr. Daniel M. Hays, a surgeon in the hematology/oncology division of Childrens Hospital of Los Angeles, is learning by examining more than 1,100 cancer survivors in a study sponsored by the National Cancer Institute.

Hays said the five-year study found that those who succeeded best in life were survivors in the 30 to 50 age group, and whose cancer, significantly, predated aggressive chemotherapy. They had attained nearly as much education as individuals of the same age who never had cancer and were earning about $3,000 to $4,000 less. The big exception were the survivors of brain tumors who had received intense cranial radiation--they were earning an average $10,000 less.

The study also discovered that childhood cancer survivors in the 20- to 30-year age bracket who had been treated with much heavier doses of chemotherapy were faring much worse than the older group. Their mean annual income was at least $6,000 to $8,000 lower than people their age who never had cancer, and they had attained about three years’ less education.

Radiation to the brain is generally considered to cause even more harmful side effects.

“Probably 30% to 40% of the children who have cranial radiation for leukemia stand a chance to have minor to major learning disabilities,” said Dr. Paula Kempert, director of the late-effects clinic at Children’s Hospital of Orange County.

“We know radiation can cause damage to brain cells,” she said, “but we don’t know specifically what cells are affected and why some children have problems and others don’t.”

The damage from radiation and chemotherapy was recognized in the 1970s, and since the following decade, the medical community has “tried to come up with ways to decrease the toxicity of treatments,” Kempert said.

Further, cancer specialists are watching survivors closely when therapy ends, looking for side effects and trying to offset the damage.

Dr. Denman Hammond, a pediatric hematologist and chairman emeritus of the Children’s Cancer Group, a consortium of 112 hospitals and medical schools researching new treatments for childhood cancer, said that when the group was founded in 1955, “the long-term survival rate was 10%. Many died on the operating table and most died in a year or two. Now (the survival rate) is over 60% and approaching 70%.”

By the year 2000, one of every 900 young adults in the United States will be a survivor of childhood cancer, according to the Children’s Medical Center in Cincinnati.

“It is such a bittersweet thing,” said Kathy Ruccione, a nurse and director of a program at Childrens Hospital of Los Angeles that monitors childhood cancer survivors in search of late-appearing side effects of cancer therapy.

“Twenty years ago, when I entered this field, we didn’t worry about late effects because so few survived,” Ruccione said. “We have given more intense chemotherapy and we know there is a price for it.”

Radiation to the brain and certain chemotherapy agents have been found to reduce IQ and harm memory, making it especially difficult for some cancer survivors to tackle such subjects as mathematics, spelling and foreign languages, Kempert said.

Cancer therapy can also affect the pituitary gland, bones and a variety of organs, sometimes stunting growth, delaying puberty or causing sterility, she said. Certain cancer-fighting chemicals also have been blamed for causing heart failure long after their use.

Kempert said not much is known yet about the life expectancy of cancer survivors.

“We have a responsibility to the patients we treated to make their lives as functional as possible and I don’t think we were,” she said, explaining why she helped to found the late-effects clinic at CHOC two years ago. “We were addressing their medical problems, but we weren’t addressing their academic and psychosocial problems.”

The degree of side effects that cancer survivors will suffer varies widely, Kempert said, stressing that some individuals may experience no or minimal ill effects.

The kinds of learning problems the children endure also run a gamut from inability to understand written directions to short-term memory loss, seeing things backward and attention deficiencies, Kempert said.

“There isn’t any way to correct it, so we need to work with the schools to design individualized education programs.”

The most severe learning disabilities, Kempert said, usually befall children who have received radiation therapy, particularly for brain tumors, when they were under the age of 5.

Anita Falcone of Garden Grove said her 6-year-old daughter, Nicole, whose brain tumor was successfully treated with surgery, radiation and chemotherapy when she was just 23 months old, walks with a limp because of partial paralysis caused by the malignancy.

Also, Falcone said because of brain damage from the cancer and therapy, Nicole frequently cannot translate her thoughts into words. Falcone said she doubts Nicole’s first-grade teachers understand how hard her daughter struggles to express herself.

“They don’t know how to deal with a child who is not in a wheelchair and yet is handicapped,” Falcone said.

Lori Kaplan, a doctoral candidate in clinical psychology, works at the late-effects clinic at CHOC and helps children return to school after cancer therapy.

It is important, Kaplan said, that the children be assessed for learning disabilities so they can get extra help before they fall several grades behind or grow so discouraged that they become school dropouts.

State law allows child cancer survivors to receive testing, special education and mental health benefits, Kaplan said. But, she said, school officials are often unaware that problems in the classroom can be linked to brain damage caused by chemotherapy or radiation.

“They may think it is because the child missed school or because of the trauma of having a chronic illness,” she said. Often, learning disabilities may not become evident until two or three years after the child has recovered from cancer--as classes become more demanding, she added.

Getting children with learning disabilities into special programs can “make a world of difference,” said Dianna Cowell of Anaheim Hills, whose daughter Lauren, 16, survived leukemia with the help of chemotherapy and cranial radiation.

Cowell said Lauren, whose cancer was diagnosed when she was 5, struggled through elementary school but did not get into a special education program until sixth grade, when she was tested by a school psychologist who was familiar with the side effects of radiation.

As a result, Lauren now participates in a special education program at Canyon High School in Anaheim, where she is in the 10th grade. She has been assigned a teacher who helps her prepare for tests and reads the questions aloud so she can comprehend them better. Lauren also gets extra time to finish her exams.

After conquering lymphoma that was not related to Hodgkin’s disease, Sarah Watkins, 10, glows with vitality. Her hair, which she lost during chemotherapy, has returned thick and wavy and she talks happily about her days at school.

But her mother, Alicia, recalled that last year, Sarah dissolved in tears because she had forgotten her multiplication tables. “She knew all of her multiplication tables in the second grade and in the third grade she couldn’t even remember two times two,” Watkins said.

Watkins said it took six months for her and Sarah’s doctor to persuade the Santa Ana Unified School District that Sarah needed to be tested. The tests showed the girl was 1 1/2 years behind in math.

Like other cancer survivors with learning disorders, Sarah has learned to compensate by using memorization aids such as flash cards and putting in more hours of homework.

Studies of cancer survivors are producing information that cancer experts say they have been using to modify therapy so it will be less harmful.

Cancer therapists say they have learned to reduce the amount of radiation they give to many childhood cancer victims without sacrificing effectiveness.

“We used to radiate everyone” as a precautionary measure, Kempert said. “Now we radiate the heads of only 20% to 25% of child cancer patients.”

Also, therapists say they have redesigned the chemotherapy that they administer to children whenever possible to eliminate certain chemicals that can cause such side effects as sterility and secondary cancers in later years.

Hammond of the Children’s Cancer Group said that, for a decade, hospitals in that group have been trying to find former patients who are cancer survivors both to gather data and to let them know about their medical vulnerabilities.

He said parents may not have told the children they had cancer. “There are thousands of people out there who don’t know they had cancer when they were babies,” he said.

Bryan Stone’s parents say that since they learned radiation and chemotherapy caused his academic problems, they have transferred him to an easier school, where he is enrolled in special education, and hired a private tutor.

Melinda Stone recently decided to tell her son the cause of his learning disability so he can better accept it. In a couple of years, she said, Bryan will start taking hormones to counter the harm from radiation and allow him to grow to manhood. And someday, he will be told he cannot have children because the radiation affected reproductive organs.

Nonetheless, Stone said she is glad she finally knows all the challenges that Bryan faces as a cancer survivor. “I can deal with it now,” she said.