The National Children’s Cancer Society Addresses the Needs of Long-Term Survivors That Are Highlighted in a New Childhood Cancer Report

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Childhood cancer survivors can face multiple gaps in their long-term care, but The National Children’s Cancer Society (NCCS) is stepping in to meet many of them, including helping survivors identify late effects and find knowledgeable health care providers when they become adults.

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Childhood cancer survivors can face multiple gaps in their long-term care, but The National Children’s Cancer Society (NCCS) is stepping in to meet many of them, including helping survivors identify late effects and find knowledgeable health care providers when they become adults.

A recent joint report from the American Cancer Society and Alliance for Childhood Cancer offers new information about pediatric cancer. In addition to outlining issues facing survivors, the report includes statistics, trends, a current list of treatment drugs, and details about ongoing pediatric cancer clinical trials and research. The report, “Translating Discovery into Cures for Children with Cancer: Childhood Cancer Research Landscape Report,” is the first time that comprehensive information about childhood cancers has been brought together with a critical analysis of challenges along with opportunities for prevention and treatment.

Among the report’s many key findings is the identification of gaps in care for survivors as they move into adulthood, an area that the NCCS focuses on through its Beyond the Cure program. More than one in three survivors aged 35 or older have experienced health effects considered severe or life threatening, including death. Called “late effects,” these can be physical, emotional or cognitive problems, often lifelong, that are typically caused by the drugs used to treat childhood cancer. This happens because treatments occur during a vulnerable period of a child’s development. Longer survival times mean more time for late effects to impact a childhood cancer survivor’s health, the report explains.

The report states that research into long-term care and late effects among childhood cancer survivors is critical in order to properly address the needs of survivors and identify risks associated with newer treatments.

The NCCS has taken a proactive approach to helping survivors cope with late effects and other challenges, including helping them reach their goals to attend college, find meaningful careers, and take charge of their own healthcare as they move into adulthood.

“We recognize that there are many childhood cancer survivors struggling to identify their late effects, achieve their career goals, and find good medical care with practitioners who are trained in treating cancer survivors,” said Pam Gabris, coordinator of Beyond the Cure. “We’ve worked closely with survivors to understand their needs and meet them with education and resources to help with everything from emotional challenges to employment to long-term healthy living.”

The NCCS also developed a free Late Effects After Treatment Tool (LEATT) to help survivors learn about the potential late effects that may occur as a result of having cancer and treatment as a child. The tool is user-friendly, easy to complete and can be accessed on a tablet or mobile phone as well as a personal computer. Users can save their report if they choose, and have the option to email it to any desired recipient. The personalized, detailed report includes specific recommendations for addressing the various late effects they could experience such as chronic pain, decreased heart function, early menopause, and hearing loss, among many others. Knowing their specific cancer treatment medications is not required to use the tool.

It is the goal of the NCCS to make sure all survivors’ issues are met with education and resources. “We provide help with everything from safe exercise programs, to tackling health insurance problems and finding resources for counseling and peer support,” said Gabris.

About The National Children’s Cancer Society
The mission of The National Children's Cancer Society is to provide emotional, financial and educational support to children with cancer, their families and survivors. To learn more about the NCCS and its support services, visit thenccs.org. The National Children’s Cancer Society is a 501C(3) organization that has provided over $62 million in direct financial assistance to more than 38,000 children with cancer. To contact the NCCS, call (314) 241-1600. You can also find the NCCS on Facebook and Twitter.

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Lori Millner
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