Childhood Cancer Facts, Questions, Answers, and Resources

Childhood cancer is the leading cause of death by disease in children under the age of 15 in the United states.

Childhood cancer is not the same as it is for adults.

  Tyler Kleine - Survivor of T-Cell Lymphoma

Tyler Kleine - Survivor of T-Cell Lymphoma

Childhood cancers are a distinct group of about 16 different types and more than 100 subtypes of cancers that are mostly found in children. While some adult cancers can be found in children, it is not common to see childhood cancers in adults. Childhood cancers do not originate, develop, or respond to treatment in the same manner as adult cancers. And while many adult cancers can be attributed to lifestyle choices like smoking, diet and obesity, or exposure to harmful substances, childhood cancers develop for unknown reasons and are not linked to the behavior or choices of those diagnosed. Some childhood cancers are even diagnosed shortly after birth.

No Early Detection

Many adult cancers can be diagnosed early, but that is not the case for children. There is no early detection method or model for kids. In the vast majority of children (more than 80%), their cancers have already spread throughout the body by the time it is diagnosed, making it much more difficult to fight. 

Treatments are different and so is research

Some childhood cancers never occur in kids older than age 5. Other childhood cancers are most often diagnosed in adolescents and teens. If a child is diagnosed with a cancer that adults also get – leukemia as an example –  they must be treated differently because their bodies are different. Therefore, research into adult cancers has very little benefit to kids. Kids require their own separate research for their type of cancers.

Below are some facts and answers to the most common questions about childhood cancer. All statistics below are for U.S. children from birth through 19 years of age.
 

DIAGNOSIS FACTS

  • The incidence rates of childhood cancers are on the rise, averaging 0.6% increase per year since the mid-1970's, resulting in an overall increase of 24% over the last 40 years. [1]
  • 1 in 285 children will be diagnosed with cancer in 2014. [1]

  • 43 children per day, or roughly 15,780 children per year, are expected to be diagnosed in 2014 with some form of cancer. This included 10,450 children between the ages of 0 and 14, and 5,330 teens between the ages of 15 and 19. [1] That's enough children to fill 2 full classrooms at school - every single day of the year.

  • The average age of diagnosis for childhood cancer is 6 years old, while adults average age for cancer diagnosis is 66 years. [9]

  • Childhood cancer is not one disease. There are actually 16 major types of pediatric cancers and over 100 subtypes [1]. Below are just some of the more common types found in children:

    • Leukemias
      • Acute lymphoblastic leukemia (ALL)
      • Acute myeloid leukemia (AML)
    • Brain and central nervous system (CNS) tumors, including tumors of the spinal cord.
      • Astrocytoma
      • Brain stem glioma
      • Diffuse Intrinsic Pontine Glioma (DIPG) 
      • Central nervous system
      • Craniopharyngioma
      • Desmoplastic infantile ganglioglioma
      • Ependymoma
      • Medulloblastoma
      • Atypical teratoid rhabdoid tumor (ATRT)
    • Neuroblastoma, a tumor of immature nerve cells that often starts in the adrenal glands, which are located on top of the kidneys and are part of the body’s endocrine (hormonal) system.
    • Wilms Tumor, a type of kidney tumor
    • Non-Hodgkin lymphoma and Hodgkin lymphoma, cancers that begin in the lymph system
    • Rhabdomyosarcoma, a type of tumor that begins in the striated muscle, which are the skeletal voluntary muscles that people can control. Other, rare soft tissue sarcomas also occur.
    • Osteosarcoma and Ewing sarcoma, tumors that begin in the bones.
    • Retinoblastoma, a tumor of the eyes.
    • Germ cell tumors, rare tumors that begin primarily in the reproductive system (the testicles in boys and ovaries in girls). These tumors can also originate in otherplaces in the body, including the brain.
    • Pleuropulmonary blastoma, a rare lung cancer that begins in the chest.
    • Hepatoblastoma and hepatocellular carcinoma, which are liver tumors.
  Sophie Godoy - Survivor - PNET brain tumor

Sophie Godoy - Survivor - PNET brain tumor

 

SURVIVAL FACTS

  • The average 5 year survival rate for childhood cancers when considered as a whole is 83%. [1,3]
  • Cancer survival rates vary not only depending upon the type of cancer, but also upon individual factors attributable to each child. [6]
  • Survival rates can range from nearly 0% for cancers like DIPG, a type of brain cancer, to as high as 90% for the most common type of childhood cancer, Acute Lymphoblastic Leukemia (ALL). [1]
  • The average survival rate, not including children diagnosed with ALL is 80%. [1]
  • In 2010 there were 379,112 childhood cancer survivors in the United States. [1]
  • Approximately 1 in 530 young adults between the ages of 20 years and 39 years is a survivor of childhood cancers. [1]
     
 Sammy Johnson - Survivor - Stage IV Neuroblastoma

Sammy Johnson - Survivor - Stage IV Neuroblastoma

 

LONG TERM HEALTH AND SIDE EFFECTS ASSOCIATED WITH TREATMENT & SURVIVAL

  • More than 95% of childhood cancer survivors will have significant health related issues by the time they are 45 years of age. [2]
  • These health related issues are side-effects of either the cancer, or more commonly, the result of the very treatments used to save their lives. [2]
  • 1/3 of children diagnosed will suffer severe and chronic side effects1/3 will suffer moderate to severe health problems; and 1/3 will suffer slight to moderate side effects. [2]
  • Cancer treatments can affect a child’s growth, fertility, and endocrine systems and they may be permanently immunologically suppressed, affecting their ability to fight off other disease and infections.
  • Radiation to a child’s brain can significantly and permanently damage cognitive function. If a child is exposed to radiation at a very young age there is a greater risk to a limited ability to read, perform basic math function, tell time or even talk.
  • Physical and neurocognitive disabilities (neurological brain function) resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation.

 

 JJ Bland - Survivor - Ewing's Sarcoma

JJ Bland - Survivor - Ewing's Sarcoma

 

MORTALITY FACTS

  • Cancer is the number one cause of death by disease among children. [4]
  • Roughly 35% of children diagnosed with cancer will die within 30 years of diagnosis. [8]
  • On the average, about 17% of children die within 5 years of diagnosis. Among those children that survive to 5 years from diagnosis, 18% will die within 30 years of diagnosis. [8]
  • Those children that do survive 5 years have 8 times greater mortality rate due to the increased risk of liver and heart disease and an increased risk of reoccurrence of the original cancer or of a secondary cancer. [8]
  • There are 71 potential life years lost on average when a child dies of cancer, compared to 17 potential years lost for adults. [1]

 

 Jenessa Britton - Survivor - Acute Lymphoblastic Leukemia

Jenessa Britton - Survivor - Acute Lymphoblastic Leukemia

 

TREATMENT, RESEARCH, AND FUNDING FACTS

  • Since 1980, only 2 drugs, both used in the treatment of Acute Lymphoblastic Leukemia – teniposide (1980)[6] and clofarabine (2004) [7] – have been approved for the first instance for use in children, and only four more new drugs have been approved for use by both adults and children. 
  • Since 1980 fewer than 10 drugs have been developed for use in children with cancer – including those specifically for children and those for both children and adults – compared with hundreds of drugs that have been developed specifically for adults. [10] 
  • For many childhood cancers the same treatments that existed in the 1970's continue without change as of 2014. [10]
  • The average cost of a stay in a hospital for a child with cancer is $40,000 per stay. [5]
  • On average, pediatric hospitalizations for cancer cost almost five times as much as hospitalizations for other pediatric conditions. [5]
  • For 2014, the National Cancer Institute (NCI) budget is $4.9 billion. It is anticipated that childhood cancer will receive 4% of that sum, or just $195 million. [7]
  • Prostate cancer, with an average age of diagnosis at 66 years, receives more research funding from the NCI than all childhood cancers, where the average patient age at diagnosis is 6 years. [7] [1]
  • Children living in the richest nation in the United States rely on lemonade and cookie sales and their parents and friends shaving their heads to raise money to research and stop the #1 disease killer of our children. We feel that is wrong, and it must change.
 Trevor Scheerer - Passed Away - Relapsed Stage IV Alveolar Rhabdomyosarcoma

Trevor Scheerer - Passed Away - Relapsed Stage IV Alveolar Rhabdomyosarcoma

 

Facts courtesy of the following:

  1. American Cancer Society, Childhood and Adolescent Cancer Statistics, 2014
  2. St. Jude Children's Research Hospital, (JAMA. 2013:309 [22]: 2371-2381)
  3. American Cancer Society, Declining Childhood and Adolescent Cancer Mortality, Cancer 2014
  4. National Vital Statistics Report, vol. 62.6, December 20, 2013
  5. Healthcare Costs and Utilization Project (HCUP), Statistical Brief #132, Pediatric Cancer Hospitalizations 2009.
  6. American Society of Clinical Oncology
  7. That National Cancer Institute
  8. Journal of National Cancer Institute Cause-Specific Late Mortality Among 5 Year Survivors
  9. CureSearch.org Cancer Statistics
  10. Additional information in this statement can be obtained from various credible and reliable sources throughout the world of pediatric Oncology.