In the United States in 2023, an estimated 9,910 new cases of cancer will be diagnosed among children from birth to 14 years, and about 1,040 children are expected to die from the disease. Although cancer death rates for this age group have declined by 70 percent from 1970 through 2020, cancer remains the leading cause of death from disease among children. The most common types of cancer diagnosed in children ages 0 to 14 years are leukemias, brain and other central nervous system (CNS) tumors, and lymphomas.

According to the American Cancer Society, currently at least 483,000 cancer survivors were first diagnosed when they were under the age of 20. Advances in cancer treatment mean that today 85% of children diagnosed with cancer are alive at least five years after diagnosis. Many ultimately will be considered cured. Partially due to this increased rate of survival, there is growing awareness of health problems that develop years later because of a cancer treatment are known as late effects.

Surviving Late Effects

Greg Armstrong, M.D., M.S.C.E., at St. Jude Children’s Research Hospital in Memphis, Tenn., is the principal investigator for a research study to better understand these late effects, increase survival, and minimize harmful health effects.

Originally, childhood cancer survivors diagnosed between 1970 and 1986 were identified for this long-term, retrospective cohort study from participating centers in the United States and Canada. More than 14,000 survivors were surveyed and followed for long-term health outcomes. In addition, about 4,000 of their siblings were recruited as comparison subjects. Due to the significant changes in therapy for children with cancer over the past 30 years, a second group of about 10,000 survivors diagnosed between 1987 and 1999 and about 1,000 of their siblings were also recruited for the study. Therefore, the CCSS cohort includes three decades of survivors of cancers in children and adolescents.

Researchers gathered information from the survivors’ medical records on primary treatment exposure that included surgery, radiotherapy, chemotherapy, or a combination of treatments.

Researchers who have studied CCSS data so far have identified a number of potential late effects, including premature menopause, stroke, and subsequent cancers. Experts say childhood cancer survivors should get close, long-term follow-up from doctors who know about these kinds of complications.

Advancement in Treatment – Personalized Treatment

Along with the increased understanding of pediatric survivorship is the increased understanding of cancer treatment for pediatric cancer patients. Advances made over the last few decades have led to more children surviving cancer than ever before. And a better understanding of the disease means that more children with cancer are getting personalized treatments. Until recently, it was common for all kids with the same type of cancer to receive the same treatments, explains Dr. Will Parsons, a child cancer specialist at Texas Children’s Hospital. But the discovery of certain gene changes, called mutations, in cancer cells has started to change this. These mutations cause cancer cells to grow out of control.

A new type of treatment called targeted drugs can block the effects of these harmful mutations. They cause cancer cells to stop growing, or to die, without causing as much damage to normal cells. Targeted drugs often have fewer side effects than chemotherapy.

“Targeted drugs have gone from a theory to a reality over the past decade,” says Parsons. This breakthrough has been aided by faster and cheaper tests to pinpoint cancer mutations, he explains.

Researchers are testing ways to expand gene mutation screening for kids with cancer. One ongoing study is called Pediatric MATCH. The study is trying to match the mutation found in a child’s tumor with a drug targeted for the specific gene mutation, instead of for a specific type of cancer. CAR T cells are the newest, most personalized cancer treatment, and Here to Serve Board member Dr. Ned Swanson will cover this treatment in more detail in the Here to Serve July 2 blog.

Ultimately greater understanding of cancer and advancements in treatments mean more surviving pediatric cancer patients and more hope for families during their cancer journeys. Understanding treatments, resources for trials, financial assistance available, and navigating the myriad of resources can be overwhelming. Here to Serve has partnered with hundreds of pediatric cancer families over the past twelve years, and has a deep knowledge and understanding of the resources available.

Here to Serve Young Cancer Patients Through to Survival

At Here to Serve, we focus on children and young parents with school-aged children in the home diagnosed with cancer who are bravely going through treatment. Many of our children and young parents will survive their cancer diagnosis. We are on their journey with them to ease the burden of daily life as they concentrate their energy on the fight. We understand that not every cancer battle will end in survival, but our hope is for survivorship so that young people can live and grow and celebrate. If you know a family with a child or young parent of school-aged children battling cancer, please have them Get Help from our  Family Care Coordinators to provide information and assistance during their cancer fight.

About the Author

Valerie Radford Cox has had a fulfilling career in the field of communications and institutional advancement. She is enjoying sharing her skills to provide information to the pediatric cancer community through the non-profit Here to Serve

Resources

• National Cancer Institute
• The Childhood Cancer Survivor Study https://www.cancer.gov/types/childhood-cancers#survivorship
• https://www.cancer.gov/espanol
• The American Cancer Institute https://www.cancer.gov/types/childhood-cancers/ccss
• NIH: https://newsinhealth.nih.gov/2023/02/advances-childhood-cancer

All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.