National Brain Tumor Society Issues Tip Sheet on Pediatric Brain Cancer for Childhood Cancer Awareness Month

Boston, Massachusetts, UNITED STATES

Newton, MA , Sept. 07, 2018 (GLOBE NEWSWIRE) -- September is national Childhood Cancer Awareness Month, and given brain tumors are the second most common group of childhood cancers and the leading cause of cancer deaths in all youth aged 19 years and under, the National Brain Tumor Society (NBTS) has released the following tips to help create further awareness and support for patients, families and the newly diagnosed.

Thousands of children and their parents hear the words “brain tumor” uttered by their doctors every year, and for those patients and their families, the impact of this diagnosis is overwhelming and life-changing forever. There currently is no consistent standard of care for these kids, few treatments, and no cure.

Beyond providing resources to this community, NBTS is committed to its mission to find better treatments and, ultimately, a cure for brain tumors. If you are working on a story about childhood cancer or pediatric brain tumors, NBTS’ CEO David Arons is available as an expert source.

National Childhood Cancer Awareness Tip Sheet – Pediatric Brain Cancer

Three Things You Need to Know About Brain Tumors

  • A brain tumor is an abnormal growth of tissue in the brain or central nervous system that can disrupt proper brain function.
  • Doctors refer to a tumor based on where the tumor is located, what cell types and characteristics are present, and whether they are cancerous (malignant) or not (benign).
  • There are more than 130 types of brain and central nervous system tumors, and treatments often vary by tumor type and other health characteristics.

Important Facts about Pediatric Brain Cancer

  • Brain and CNS tumors are the second-most prevalent form of pediatric cancer in kids under 19
  • Pediatric brain tumors are the leading cause of cancer-related death among children and adolescents ages 0-19, surpassing leukemia
  • Pediatric brain tumors now accounting for three out of every 10 cancer death in children in the U.S.
  • More than 28,000 children (0-19 years of age) are estimated to be living with a brain tumor in the US
  • An estimated 4,610 new cases of childhood and adolescent (15-19 years of age) primary malignant and nonmalignant brain and CNS tumors are expected to be diagnosed in 2018
  • The average survival rate for all primary pediatric (0-19 years of age) malignant brain tumors is 73.9%
  • Five-year relative survival rates for children diagnosed with pediatric high-grade gliomas are only 15-30% on average 
  • For DIPG, the diagnosis is "uniformly fatal" with most children only surviving 9 months - about the length of a typical school year - beyond diagnosis.
  • The five-year survival rate for patients with DIPG is around only 1%.
  • There has never been a drug developed and approved specifically for malignant pediatric brain tumors (pediatric brain cancer)
  • Brain tumors have the highest per-patient initial cost of care for any cancer group, with an annualized mean net costs of care in 2010 US dollars at well over $100,000
  • There is no agreed-upon standard of care among doctors treating Pediatric high-grade gliomas; the few treatments available to children with brain tumors were developed for adults, and can cause high toxicities in pediatric brain tumor patients
  • Survivors are often left with a life-time of physical, psychological, cognitive, and other deficits as a result of their treatment
  • Survival rates of children with high-grade glioma have gotten worse since 1982, with 1-year survival rates of 59.3% from 1982–1986 and 57.1% from 2007–2011; 5-year survival rates of 33.2% from 1982–1986 and 25.3% from 2007-2011; and 10-year survival rates of 30.8% from 1982–1986 and an estimated 25.7% from 2007-2011

Seven Symptoms to Watch For

Brain tumor symptoms can vary according to tumor type and location. There are times a person may have no symptoms when their brain tumor is discovered, other times they might experience:

  • Recurrent headaches, particularly if accompanied by nausea and/or vomiting
  • Issues with vision
  • Seizures
  • Changes in personality
  • Short-term memory loss
  • Poor coordination
  • Difficulty speaking or comprehending

Diagnosing a brain tumor can be a complicated process and involve a number of specialists. A brain scan, most often an MRI, is the first step. A biopsy may be necessary, so a pathologist can be brought in to help identify the brain tumor type.

Eight Brain Cancer Terms You Need to Know

  • Brain Tumor: A brain tumor is an abnormal growth of tissue in the brain or central nervous system that can disrupt proper brain function.
  • Diffuse intrinsic pontine glioma (DIPG): A type of central nervous system tumor that forms from glial (supportive) tissue of the brain and spinal cord. Diffuse intrinsic pontine glioma usually occurs in children. It forms in the brain stem.  
  • Glioblastoma: A fast-growing type of central nervous system tumor that forms from glial (supportive) tissue of the brain and spinal cord and has cells that look very different from normal cells. Glioblastoma usually occurs in adults and affects the brain more often than the spinal cord. Also called GBM, glioblastoma multiforme, and grade IV astrocytoma. 
  • Glioma: A cancer of the brain that begins in glial cells (cells that surround and support nerve cells).
  • Benign: The least aggressive type of brain tumor is often called a benign brain tumor. They originate from cells within or surrounding the brain, do not contain cancerous (malignant) cells, grow slowly, typically have clear borders, and do not spread into other tissue.
  • Malignant: Malignant brain tumors contain cancerous cells and often do not have clear borders. They are considered to be life threatening because they grow rapidly and invade surrounding brain tissue.
  • Primary: Tumors that start in cells of the brain are called primary brain tumors. Primary brain tumors may spread to other parts of the brain or to the spine, but rarely to other organs.
  • Metastatic: Metastatic, or secondary brain tumors, begin in another part of the body and then spread to the brain. These tumors are more common than primary brain tumors and are named by the location in which they begin.

National Brain Tumor Society

About National Brain Tumor Society
National Brain Tumor Society (NBTS) is the largest nonprofit organization in the U.S. dedicated to the brain tumor community. We are fiercely committed to finding better treatments and driving rapid progress toward a cure for brain tumors. We drive a multi-faceted and thoughtful approach to aggressively influence and fund strategic research, as well as advocate for public policy changes, in order to achieve the greatest impact, results, and progress for brain tumor patients. Money raised by the generous donations of our supporters has directly funded groundbreaking discoveries, programs, clinical trials and policy initiatives. To learn more visit


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