I Survived Childhood Cancer. Now What?


This year alone, the American Cancer Society projects that 14,660 new cases of cancer will be diagnosed in children and adolescents. About 1,850 children and adolescents die from cancer annually – making it one of the leading causes of death in this age group. However, an increasing proportion of kids now survive cancer.

“If you look at all diagnoses, all ages, all stages, the cure rate is over 80 percent,” says Dr. Jean M. Tersak, an oncologist and director of the Survivorship Program at Children’s Hospital of Pittsburgh of UPMC. For many kids with leukemia, survival rates exceed 90 percent. But childhood cancer survivors routinely face substantial health challenges from treatment as they grow older, which profoundly affect their quality of life and can hasten death. Oncologists say these so-called late effects range from chemo leading to heart problems and infertility to radiation affecting mental development and causing secondary cancers. So top hospitals around the country that treat cancer in kids have increasingly been focusing on not only curing with care, but reducing so-called late effects from treatment.

As part of that effort, some hospitals are participating in large-scale research like the National Institutes of Health-funded Childhood Cancer Survivor Study, which uses data from more than 14,000 survivors of childhood cancer who were diagnosed between 1970 and 1986, plus more than 10,000 survivors diagnosed between 1987 and 1999.

“It’s the only way we’ll ever understand the cost of the cure,” says Tersak of Children’s Hospital of Pittsburgh participation in research including the Childhood Cancer Survivor Study. The study has found that survivorship outlooks have improved for some who’ve beaten childhood cancer: “Looking at patients that were diagnosed between 1970 and 1986 versus patients diagnosed between 1987 and 1999 – that latter group has a lower incidence of second cancers and heart failures and other late effects – based on things we learned with the first group, and things that we changed in therapy,” Tersak notes.

She sees reduction of the use of radiation therapy to the brain as the biggest advancement in reducing late effects, including cognitive deficits that can hold kids back in school and reduce their professional options when they enter the workforce as adults. In addition, clinicians are looking at using more targeted radiation therapies – as in adults – that zap cancer cells, while damaging less of the normal healthy cells. Oncologists are also experimenting with using newer combinations of chemo drugs that reduce side effects, including heart problems, later. Moreover, doctors are seeking to anticipate late effects before administering treatment like chemo. At Children’s Hospital of Pittsburgh, some patients are being placed on a beta blocker medication commonly used to treat high blood pressure to see if that might reduce cancer treatment-related problems with heart function. That’s being done as part of another national study through the Children’s Oncology Group, which conducts research for children, adolescents and young adults with cancer. “We’ll follow those patients over time to see if that medication has made a difference,” Tersak says.

Though initial evidence shows advancements are making a difference in reducing late effects, experts say much more still remains to be done. According to the Childhood Cancer Survivor Study, by age 50, more than half of survivors have experienced a severe or life-threatening health condition, compared to only 19 percent of siblings. These can range from heart failure to a secondary cancer diagnosis. And the study finds the “health gap” continues to widen with age.

Given those challenges, cancer survivors and pediatric oncology experts say that for someone facing a new cancer diagnosis, its critical not to put off talking about life after cancer – even if it may seem counterintuitive to do so. “We … start talking about life after cancer from the very beginning,” says Dr. Karen Burns, clinical director of the Cancer Survivorship Center at Cincinnati Children’s Hospital Medical Center and an assistant professor of pediatrics at the University of Cincinnati. This has two benefits, according to Burns: “First, it shows the family that we intend to get them through this.” Though high survival rates still afford no guarantee, clinicians say it’s critical for a child’s mind and body to be future-oriented in treatment. Secondly, the concept of survivorship and late effects is introduced in the beginning. “We cannot control everything and late effects do happen, but knowledge is power and often your greatest ally,” she says.

In clinical practice and research, Burns is exploring ways to improve treatment of long-term cancer survivors with fertility issues and prevent the same issues caused by chemo and radiation for future childhood cancer patients. “Our goal is to address future fertility with every patient and take whatever steps we can to ensure it is preserved, so the child can have their own family one day,” she says. Burns adds that she works closely with the hospital’s adolescent gynecology and urology divisions to deliver the most comprehensive and cutting-edge care in fertility preservation, ranging from sperm banking or testicular tissue cryopreservation for male patients to ovarian tissue cryopreservation for female patients. Still being evaluated as an option, the hope is that these preserved tissues could someday be used by survivors to start a family, where that’s not otherwise possible.

Katie Wilson is now nurse at Cincinnati Children’s Hospital Medical Center, where she underwent treatment for cancer as a teenager.

Katie Wilson is now nurse at Cincinnati Children’s Hospital Medical Center, where she underwent treatment for cancer as a teenager.(Courtesy of Cincinnati Children’s Hospital and Katie Wilson)

Along with understanding treatment options, experts say it’s important patients and doctors talk about limitations and the potential for late effects in order to appropriately set expectations. Diagnosed with a rare type of leukemia as a teenager, Katie Wilson now takes medication to maintain her blood pressure and heart rate because of a severe heart condition called cardiomyopathy she developed as a result of chemo. “Because of the heart issue, I’m not able to actually go through pregnancy, because it’s too much of a risk on my heart,” says the 28-year-old of Fort Thomas, Kentucky. As a patient at Cincinnati Children’s – where she’s now a nurse treating oncology patients herself – she says her medical team did a great job early in the process of alerting her to potential late effects of treatment. She and her husband got married four years ago and have been thinking lately about having a family. “We’ve being talking a lot about that with my cardiologist,” she says. However, she says they’ve put things on hold for now, adding that they’re open to adopting.

Katie Wilson

Katie Wilson(Courtesy of Cincinnati Children’s Hospital and Katie Wilson)

At the University of Texas MD Anderson Cancer Center in Houston, clinicians use proton beam radiation, a highly targeted therapy, to focus on brain tumors – including in pediatric patients. “If you can focus it in a small area where the tumor is, you may not have the cognitive effects,” says Dr. Cindy Schwartz, division head and chair ad interim of pediatrics at MD Anderson. Experts say cognitive late effects are particularly pronounced in kids since young brains are still developing, and these deficits can affect everything from a child’s ability to learn to occupational prospects later on.

No matter what the long-term cost of the cure is – or the means by which late effects may be reduced – clinicians say it’s critical that patients are monitored long after their cancer treatment is completed to improve the best possible long-term outlook. Approaches differ on how to do that, however, with some research being done on using telemedicine, such that adult survivors don’t have to travel long distances to where they were originally treated as child – and to ease the hand-off to adult doctors. But experts agree patients and their loved ones are best served by seeing clinicians who have full knowledge of their cancer treatment and its potential effects, and that a childhood cancer survivor’s health provider should, at the very least, be in contact with the doctors or institution where that patient was treated.

In the meantime, experts say much more study is still needed to best determine how to care for childhood cancer survivors in the years after they’ve been deemed cancer-free. “We need to continue to try to learn how to support these patients,” Schwartz says – to try to find “better ways … of curing them without harming them in the long run.”


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