The patients themselves are understandably reluctant to hold onto cancer memories. "These young folks want to put the cancer behind them and be like everyone else," Ganz says. "But we're also telling them, 'You're not normal.' They've survived this experience, but they have these risks."
Once cancer, and childhood, are behind patients, the general physicians who treat them as adults need detailed records on past drug doses, age of treatment or exposure to radiation to be aware of the unique needs of survivors.
For The Record
Los Angeles Times Wednesday, May 28, 2008 Home Edition Main News Part A Page 2 National Desk 3 inches; 115 words Type of Material: Correction
Childhood cancer: In a Health section article Monday on survivors of childhood cancer, Dr. Jacqueline Casillas was referred to as director of the UCLA-Livestrong Survivorship Center of Excellence. She is associate director; the director is Dr. Patricia Ganz. The article said the UCLA-Livestrong center was in the Mattel Children's Hospital. It is part of UCLA's Jonsson Comprehensive Cancer Center. The same article said that a study of childhood cancer survivors that found a five to 10 times greater risk of heart disease in early adulthood (compared with healthy siblings) was reported this month at a meeting of the American Society of Clinical Oncology. The findings, released in advance of the meeting, will be presented June 3.
For The Record
Los Angeles Times Monday, June 02, 2008 Home Edition Health Part F Page 9 Features Desk 3 inches; 113 words Type of Material: Correction
Childhood cancer: In a May 26 article on survivors of childhood cancer, Dr. Jacqueline Casillas was referred to as director of the UCLA-Livestrong Survivorship Center of Excellence. She is associate director; the director is Dr. Patricia Ganz. The article said the UCLA-Livestrong center was in the Mattel Children's Hospital. It is part of UCLA's Jonsson Comprehensive Cancer Center. The same article said that a study of childhood cancer survivors that found a five to 10 times greater risk of heart disease in early adulthood (compared with healthy siblings) was reported this month at a meeting of the American Society of Clinical Oncology. The findings, released in advance of the meeting, will be presented Tuesday.
They also need to be provided with information on the increased risks the survivors may face because of their cancer treatments. That way, physicians who might have few cancer survivors in their practices will understand that illnesses of middle and old age can appear sooner in this group.
"An adult cardiologist will be familiar with cardiac patients but may not be up to date on heart problems in childhood cancer survivors," Casillas says.
For young adults whose treatment occurred decades ago, gathering the old information isn't easy. "We've seen patients who were treated in New York, in Israel," Casillas says. "It is often very challenging to get the medical records. Their oncologist may no longer be practicing, or even alive."
Parents, traumatized by almost losing their children, can be poor sources of information too, as eager as their growing kids to put the experience behind them. "Some survivors don't even remember their cancer experience," Casillas says. "Sometimes, parents don't even tell their children that they had cancer. We try to piece the record together as best as we can."
Such challenges are why many institutions have experts to help ease pediatric patients, and their records, into the adult medical world. (Locally, these include the UCLA-Livestrong Survivorship Center of Excellence at Mattel Children's Hospital, USC's LIFE Survivorship and Transition Program, the Children's Hospital of Orange County's Long-Term Follow-Up Clinic and the City of Hope National Medical Center's Childhood Cancer Survivor Program.) The programs also see adult patients who were treated for childhood cancer at other centers.
Ganz, for example, strives to help adult survivors of childhood cancer develop individual long-term medical plans, a road map for care that they can show to every doctor in their future. Depending on their treatment history, it could include earlier than normal mammograms, echocardiograms or blood glucose tests.
Patients, as they enter adulthood, should arm themselves with the most complete and detailed copies of their medical records they can gather. And parents of children who are recovering from cancer now can familiarize themselves with the likely future health issues and begin to prepare.
For learning problems, special education programs can help kids catch up. The 2003 Institute of Medicine report on childhood cancer survivors found that they had the same rate of high school and college graduation as their siblings, suggesting that, with special education classes, most were able to overcome the early learning deficits.
Parents can also be on the lookout for mental health problems. "We tell parents and patients that just because the most intensive part of treatment is over doesn't mean you're going to feel wonderful psychologically," Kazak says. "You have to deal with new problems that you didn't understand early on."
An important, and nonmedical, part of preparing for life after childhood cancer is getting a good education that leads to a good job -- and that means a job with health insurance. At about age 21, childhood cancer survivors fall off their parents' health insurance plans. The lifelong "pre-existing condition" of childhood cancer could make individual health insurance unattainable or unaffordable.
"How do they find a vocation that's going to be rewarding but will provide them with good pay and benefits? That means completing education," says Dr. David Freyer, director of the LIFE Survivorship and Transition Program at Childrens Hospital Los Angeles. "We encourage them to stay in school."
Children surviving cancer have made it through a harrowing medical experience. They'll need a job. And they'll also need to understand fully what happened to them -- some when they were too young to know -- and how it affects their future.
"What happens to people we've made infertile? What happens to them psychologically? What happens medically?" says Dr. Leonard Sender, medical director of the Children's Hospital of Orange County Cancer Institute. "We're getting cures. Now we owe it to them to help them survive."