People who were cured of cancer as children often suffered later in life from health problems caused by chemotherapy and radiation, a study of more than 10,000 survivors has found.
The most severe ailments occurred in those who had had Hodgkin’s disease or cancers of the bones or central nervous system, and women generally fared worse than men. The incidence of problems increased over time and did not plateau.
Though the study did not include anyone who started treatment after 1986, the findings are still relevant for children being treated today, researchers said. Treatments have improved, but some of the same drugs are still in use, and radiation remains essential for certain cancers.
“Our hope and anticipation is that patients undergoing therapy today will not have quite that burden, but they will certainly face long-term health conditions,” said Dr. Kevin C. Oeffinger, the director of the program for adult survivors of pediatric cancer at the Memorial Sloan-Kettering Cancer Center in New York, and the first author of a report being published today in The New England Journal of Medicine. “It is unavoidable, given the toxicity of the therapies.”
The illnesses are a price of success. Nearly 80 percent of children and teenagers with cancer now live at least five years, and many are cured. Before the 1970’s, few survived. Today, there are about 270,000 long-term survivors of childhood cancer in the United States. But the strong measures needed to kill cancer can eventually take their toll on normal cells and organs as well, especially when added to the usual declines that occur with aging.
It may seem cruel to give more bad news to people who have already been through one dreadful ordeal, but cancer experts say the picture is not all bleak. Many of the later conditions are treatable, especially if found early, so patients can help themselves by realizing they are at risk, finding out what therapies they received (some are riskier) and having regular checkups with doctors who understand the delayed effects of chemotherapy and radiation.
“I think there is much we can do to maximize their health,” Dr. Oeffinger said. “There is a silver lining.”
But he also said that relatively few patients received the care they needed, especially when they stopped seeing cancer specialists and switched to internists or family doctors.
“Most are not followed on a regular basis,” Dr. Oeffinger said. “Most clinicians are not aware of the risks.”
The report, from the Childhood Cancer Survivor Study, is not the first to blame cancer treatments for later illnesses. But it is the most comprehensive, including 10,397 young people treated at 26 hospitals in the United States and Canada from 1970 to 1986 and, for comparison, 3,034 of their healthy siblings.
The patients had cancer before age 21 and survived for at least five years. When studied, they ranged in age from 18 to 48, and the siblings from 18 to 56.
“This is the first time that anybody has been able to quantify the overall incidence of chronic illness, and it did surprise me that it was this high,” said Dr. Leslie L. Robison, another author of the study and the chairman of epidemiology and cancer control at St. Jude Children’s Research Hospital in Memphis.
Among the cancer survivors, 62 percent had at least one chronic health problem, compared with 37 percent of their siblings. About 28 percent of survivors had illnesses that were severe, life-threatening or disabling, compared with 5 percent of siblings. Almost 24 percent of survivors but only 5 percent of siblings had three or more ailments.
Despite the high rates of illness, many survivors are upbeat.
“Even though 60-some percent had problems, the majority said, ‘We’re doing fantastic,’ ” said Dr. Ann C. Mertens, an author of the study and an epidemiologist at the University of Minnesota. “I’d say it’s the resiliency factor. They’ve had a brush with a very serious disease, and they come out the other side and say life is good.”
Sometimes the damage from chemotherapy can set in quickly. Samantha Eisenstein, 28, had surgery and intensive chemotherapy for a large tumor in her shinbone in 2000, when she was 21 and a senior in college. Less than a year after finishing the treatment, Ms. Eisenstein developed a condition called myelodysplastic syndrome, a precursor to leukemia, almost certainly caused by the cancer drugs. She needed more chemotherapy, of a different type, and a bone marrow transplant.
“I celebrated five years of remission in August,” she said.
Ms. Eisenstein works full time at a charity organization that she started (thesamfund.org) to help other young adults with cancer, and she plans to marry next spring. But first she needs more surgery, to repair a fracture in the leg where the cancer started.
“I plan to dance at my own wedding,” she said.
She hopes to have children but is unsure whether she will be able to, because chemotherapy often shuts down the ovaries. “I think it probably will not happen, but in the back of my head there’s a tiny little part that’s still hoping,” Ms. Eisenstein said, adding that she had put off having her ovarian function tested.
Early in their relationship, she told her fiancé that she might be infertile, figuring, she said, “if this is going to be deal breaker, let it be a deal breaker now.”
“ ‘You know,’ ” she said he replied, “ ‘there are a lot of kids out there who need a home.’ ”
Dr. Oeffinger said that by the 1980’s and 90’s, doctors were trying to modify children’s cancer treatments in hopes of lessening severe side effects.
“Back in the 1970’s, whole brain radiation was very effective for preventing recurrences in leukemia,” he said. “It was one of the major advances in being able to cure the disease. But it led to significant cognitive deficits, problems with I.Q. loss, especially in those treated at a young age.”
By the 80’s, Dr. Oeffinger said, hospitals had lowered the dose or quit using the technique. But even without radiation, chemotherapy can still cause learning problems, he said.
It became clear in the 90’s that high doses of radiation to the chest, often used to treat Hodgkin’s disease in children, could predispose girls to breast cancer, even by age 30.
Today, doctors avoid irradiating girls’ breasts whenever possible, and women who had such treatment are advised to have yearly breast cancer screenings — preferably with magnetic resonance imaging instead of mammograms, to avoid more radiation, Dr. Oeffinger said.
When it comes to learning about the results of research on survivors, many patients feel torn.
Allan Goldberg, 39, who had a rare type of cancer on his palate when he was 12, said: “Part of you wants to not think about it, and part of you is like, ‘Yeah, I should.’ There’s a fine balance between living your life not in fear and being prudent.”
Mr. Goldberg, who lives in Vail, Colo., competes in triathlons and directs a camp that runs free kayaking trips for young adults with cancer (firstdescents.org).
Despite 20 years of working with other cancer patients, Mr. Goldberg did not learn until eight or nine years ago that he was at risk for heart disease and bladder cancer because of his treatments.
“I’m a fairly educated individual and I didn’t know about this,” he said. “I felt stupid.”
Just two weeks ago tests, found that the back pain he was attributing to a sports injury was because of cancerous growths on his vertebrae. Doctors suspect that the cancer spread there from a tumor that formed in his salivary glands because of the radiation he received long ago.
The growths seem to be dormant, and Mr. Goldberg is hoping that they do not need treatment.
“I’ll beat this,” he said.
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