Cancer Therapy’s Troubling Legacy : Medicine: Many survivors of childhood tumors face an irony: The treatments that saved their lives can cause major side effects such as learning disabilities, memory loss and stunted growth.
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ORANGE — 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 missed time from school while receiving chemotherapy treatment.
“We thought he was being lazy and not trying,” said Melinda Stone, Bryan’s mother. “He had been a smart baby, very coordinated.”
But when a neuropsychologist evaluated Bryan last year, he discovered that the boy’s learning disabilities, including problems concentrating and memorizing, probably stemmed from the intense chemotherapy he had received for three years, starting when he was 2.
Bryan, now 11, is among an increasing number of child 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 can produce such major side effects as learning disabilities, stymied growth, weakened hearts and lungs and loss of fertility.
“It is such a bittersweet thing,” said Kathy Ruccione, a nurse and director of a program at Childrens Hospital 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.”
Handicaps may persist through life, says Dr. Daniel M. Hays, a surgeon in the hematology/oncology division of Childrens Hospital Los Angeles who has examined more than 1,100 cancer survivors in a study sponsored by the National Cancer Institute.
Hays said the five-year study shows that those who succeeded best in life were survivors in the 30-50 age group, and whose cancer, significantly, predated the advent of aggressive chemotherapy in the 1970s. These people--who were treated primarily with surgery and lower doses of chemotherapy--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 a year.
The study also discovered that childhood cancer survivors in the 20-30 age bracket who had been treated with much heavier doses of chemotherapy were faring much worse, socioeconomically, 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 fewer years of education. (Experts acknowledge that many of those who overcome cancer today are living because of chemotherapy and radiation and would not have survived with the treatments available 20 years ago).
Generally considered to cause even more harmful side effects is radiation to the brain, which is administered to some leukemia patients to guard against the possibility that cancer may be hiding in or migrate to the brain through the spinal fluid.
“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. Since the 1980s, the medical community has “tried to come up with ways to decrease the toxicity of treatments,” Kempert said.
Nevertheless, experts point out that without chemotherapy and radiation, the picture would be much grimmer indeed. 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 Childrens Medical Center in Cincinnati.
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, said Kempert.
After conquering non-Hodgkin’s lymphoma, Sarah Watkins, 10, glows with vitality. Her hair, which she lost during chemotherapy, has grown back 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 a year and a half behind in math.
Like other cancer survivors with learning disorders, Sarah has learned to compensate by using memorization aids like flash cards and putting in more hours of homework.
Cancer therapy can also affect the pituitary gland, bones and a variety of organs, sometimes stunting growth, delaying puberty or causing sterility, Kempert said. Certain cancer-fighting chemicals also have been blamed for causing heart failure long after their use.
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 and possibly the surgery.
Also, Falcone said, because of brain damage from the cancer and therapy, Nicole frequently cannot translate her thoughts into words.
Lori Kaplan, a doctoral candidate in clinical psychology, works at the Late Effects Clinic at Children’s Hospital of Orange County 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.
Kaplan said state law allows child cancer survivors to receive testing, special education and mental health benefits. But she said school officials often are 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.
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, said Kempert. “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.
The parents of Bryan Stone say that since they learned radiation and chemotherapy caused his academic problems, they have transferred him to a different 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 years, she said, Bryan will start taking male hormones to replace those lost in the radiation therapy.
Stone says she is glad she finally knows all the challenges that Bryan faces as a cancer survivor. “I can deal with it now,” she said.