Protecting Health After Childhood Cancer

Written By:Stacy Simon
nurse instructs a mother and her young daughter in a doctor's office

More than 80% of children with cancer now survive at least 5 years and most are ultimately cured, thanks to advances in cancer treatment over the past several decades. An estimated 400,000 survivors of childhood and adolescent cancer are living in the US today.

However, the same cancer treatment that saves children’s lives may affect their health as they grow up, and into adulthood. Specialized follow-up care is needed to catch any problems as early as possible when they are easier to treat. The risks of side effects from childhood cancer treatment depend on a number of factors, such as the type of cancer, the specific cancer treatments and doses used, and the child’s age at the time of treatment. Some side effects might not show up until months or years after treatment ends. That’s why they are sometimes called late effects or long-term outcomes.

If your child is being treated for cancer, it’s important to discuss what these possible effects might be with your child’s medical team. Some of the more common late effects of cancer treatment include:

  • Heart or lung problems (due to certain chemotherapy drugs or radiation therapy)
  • Slowed or delayed growth and development (in the bones or overall)
  • Changes in sexual development and ability to have children later in life (in both boys and girls)
  • Learning problems
  • Increased risk of other cancers later in life

According to Saro Armenian, DO, MPH, chair of the Children’s Oncology Group Survivorship and Outcomes Committee and Medical Director of the Childhood Cancer Survivorship Clinic at City of Hope, parents of newly diagnosed cancer patients naturally tend to be focused on getting through the treatment itself. But he says information about late effects is important, and parents should pay attention to the doctor’s explanation of their child’s individual risk. If the doctor doesn’t introduce the discussion about late effects, he says, parents should ask for it.

Make a follow-up plan

Once treatment is finished, the health care team will set up a schedule for regular follow-up exams and tests. As time goes by, the risk of the cancer coming back goes down, and doctor visits might be needed less often. But they are still important because some side effects of treatment might not show up until years later.

To help raise awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines can help you know what signs and symptoms to watch for, what types of screening tests should be done to look for problems, and how late effects can be treated.

The guidelines are written for healthcare professionals, but Dr. Armenian says it’s important for parents to know about them. He says childhood cancer survivors will need to pay attention to their health care needs for the rest of their lives. He says they should ask their health care provider about their own unique risk of late effects based on the cancer treatment they received, and diligently follow their providers’ health care recommendations.

Research about late effects

Much of what doctors know about late effects has come from the Childhood Cancer Survivor Study (CCSS), funded by the National Cancer Institute. Researchers in the US and Canada began sending questionnaires to more than 14,000 childhood cancer survivors in 1994 to learn about their long-term health outcomes. The participants were originally diagnosed with cancer between 1970 and 1986.

The CCSS researchers periodically release new studies describing late effects that can affect childhood cancer survivors. According to Dr. Armenian, serious and life-threatening health conditions from treatment are relatively rare, but it’s important for survivors to discuss their unique risks with their health care provider. He also points out that the intensity of treatments has changed since the 1970s and 1980s, lowering the risk for late effects. For example, children today often get lower doses of radiation.

To study the effects of more modern treatments, the CCSS researchers began recruiting a second set of participants in 2007: about 10,000 adults who had been treated for cancer as children between 1987 and 1999.

In addition, other research groups in the US and around the world are conducting studies to identify patients who are at high risk for specific late effects in order to tailor their treatment in ways that lessen those complications or even prevent them from occurring. Researchers are working on ways to understand why one child develops a complication after treatment, while another child does not.

The role of lifestyle factors

One such effort is the St. Jude Lifetime Cohort Study (St. Jude LIFE), which brings childhood cancer survivors of 10 years or more to St. Jude Children’s Research Hospital for a battery of medical tests. In a recent study of St. Jude LIFE participants, researchers found links between a heart-healthy lifestyle and lower risk of metabolic syndrome. Metabolic syndrome refers to a collection of health risk factors including high blood pressure, obesity, high triglycerides, and other factors that can lead to heart disease, diabetes, and stroke.

Many childhood cancer survivors are at increased risk of developing heart disease because they were treated with radiation to the chest or chemotherapy with drugs called anthracyclines. In addition, children who received radiation to the head have a higher risk of developing metabolic syndrome.

Published July 28, 2014 in the journal Cancer, the study found that survivors who did not adopt a lifestyle that included regular physical activity and a healthy diet were more than twice as likely as those who did to develop metabolic syndrome. The finding suggests there are some steps survivors can take to influence their risk of developing complications from treatment.

The American Cancer Society recommends that everyone, including people living with cancer and those who’ve survived cancer maintain a healthy weight, be physically active, and eat a healthy diet with an emphasis on fruits, vegetables, and whole grains. Staying away from tobacco is important for survivors and everyone else as well.

The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Lifestyle and Metabolic Syndrome in Adult Survivors of Childhood Cancer: A Report From the St. Jude Lifetime Cohort Study. Published online July 28, 2014 in Cancer. First author Webb A. Smith, MS, St. Jude Children’s Research Hospital, Memphis, Tenn.


Lifestyle and Metabolic Syndrome in Adult Survivors of Childhood Cancer: A Report From the St. Jude Lifetime Cohort Study. Published online July 28, 2014 in Cancer. First author Webb A. Smith, MS, St. Jude Children’s Research Hospital, Memphis, Tenn.

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