Childhood Cancer

Types of Childhood Cancer

It is important to note that when we say "childhood cancer" we are actually speaking of a group of diseases.


Leukemia is a cancer of the bone marrow and tissues which produce the circulating blood cells. Leukemias are the most common childhood cancers. Types of leukemia include:

  • Acute Lymphoblastic Leukemia (ALL): The most common childhood cancer. Almost 75% of children with leukemia have ALL, a cancer of the lymphoid cells in the bone marrow and the lymphoid organs of the body. They are involved in the body’s immune system.
  • Acute Myelogenous Leukemia (AML): AML (also called acute myeloid leukemia, acute nonlymphatic leukemia or ANLL) is cancer of the myeloid blood cells which are produced in the bone marrow and which help fight bacterial infections.
Cancers of the Central Nervous System
  • Brain tumors: There are many types of brain tumors; the most common are called gliomas.
  • Neuroblastoma: is a cancer of the sympathetic nervous system which most often originates in the adrenal glands above the kidney.

Sarcomas are cancerous tumors involving the bones and soft tissues.

  • Bone cancers
    • Osteosarcoma: the most common type of bone sarcoma. These tumors often are located at the growing end of the long bones of the extremities, close to the joints.
    • Ewings Sarcoma: a bone cancer that often appears in the middle of the bone. Commonly found in the thighs, hipbones, upper arms and ribs.
  • Soft Tissue Sarcomas:
    • Rhabdomyosarcoma: a soft tissue sarcoma that develops in muscles. Most often found in the head, neck, kidneys, bladder, arms and legs.

Lymphoma is a tumor of the lymph tissues, which are part of the immune system. Types of lymphoma include:

  • Hodgkin disease or Hodgkin's lymphoma: affects lymph nodes nearer to the body’s surface, such as in the neck, armpit and groin area.
  • Non-Hodgkin Lymphoma: affect lymph nodes found deep within the body. There are many types of lymphoma, include Burkitt's, non-Burkitt's, and lymphoblastic lymphoma.
Liver Cancers

Liver cancer is an abnormal growth (tumor) in the liver. The most common forms of liver cancer in children are:

Cancers of the Kidney Other Types of Cancers
  • Retinoblastoma: is a malignant tumor of the retina (a thin membrane in the back of the eye).
  • Germ Cell Tumors: Germ cell tumors appear most commonly in the testes, the ovaries, the area at the bottom of the spine (sacrococcygeal) and in the middle of the brain, chest or abdomen.


Childhood Cancer - Incidence and Mortality

When we talk about childhood cancer, we are referring to an age group of those under 20 years old. This group represents nearly 30% of the population of the United States. In that group;


#1 - Approximately 12,500 children are diagnosed with cancer each year, that's 34 every day
  • the incidence of childhood cancer has INCREASED over the past 20 years. Over the past 20 years, there has been some increase in the incidence of children diagnosed with all forms of invasive cancer, from 11.5 cases per 100,000 children in 1975 to 14.8 per 100,000 children in 2004
  • 1 in 300 boys under the age of 20 will be diagnosed with cancer
  • 1 in 333 girls under the age of 20 will be diagnosed with cancer

#2 - Every year approximately 2,500 children are killed by this set of diseases, that's 7 every day

  • Over a five year period, approximately 20% (1 in 5) of the children diagnosed do not survive
  • Over a ten-year period, approximately 25% (1 in 4) of the children diagnosed do not survive

#3 - Childhood cancer is the #1 cause of death from disease for our children

  • Every year it kills more than asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined

#4 - Even when a child reaches the 5-year survival milestone, they are still at risk to long-term effects and excess mortality.

Childhood Cancer - Research and Progress

Since the mid-1950s, cooperative research has improved the survival rates for childhood cancer from less than 10% to almost 80% overall. Cure rates vary according to each specific type of childhood cancer. Some types remain very difficult to cure. All cure rates need to be improved.

Multi-institution cooperative research of major scope has also paid dividends well beyond childhood cancer, contributing to:

  • understanding the abnormal biology of cancer cells,
  • treatments for adults with cancer,
  • developing principles of team management for other diseases of children and adults, and
  • pioneering the enormous advantages of multi-institution cooperation in clinical research.
  • Goals for the next five years
  • Increase the overall childhood cancer survival rate to 85% by 2008.
  • Reduce deaths from childhood cancer by 20%.
  • Focus on the types of childhood cancer most difficult to cure.
  • Escalate research to develop treatments which cure the child while causing the least possible side effects and long-term effects.
  • Link biology and laboratory investigations to clinical trials, to better identify new options for improved and less toxic therapy.
  • Evaluate short-term and long-term consequences of cancer and anti-cancer therapy in patients who are cured, to improve the quality of life during and after treatment.


Childhood Cancer - Funding the Research

Childhood cancer is considered rare. And, by definition it is. But rare only has two meanings; happening to you or someone else. Do you believe that 1 in 300 for your son or nephew or grandson or friend is rare? Do you believe that 1 in 333 for your daughter or niece or granddaughter or friend is rare?

According to Kate Shafer, Director of Advocacy for CureSearch National Childhood Cancer Foundation, most federal funding for childhood cancer research comes from the National Cancer Institute (NCI), with a small amount coming through appropriations. Schafer says, "It's a bit difficult to determine how much in any given year is spent on childhood cancer research. It is around $170 million per year." Most of that goes toward laboratory research. The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.

So let's look deeper into funding for research to find a cure for childhood cancer. There are several key articles here at PAC2 which describe various aspects of the funding problem.

  1. So where does my money go? Childhood Cancer Funding - this PAC2 article discusses the funding that is devoted to childhood cancer from the American Cancer Society (ACS), the Leukemia and Lymphoma Society (LLS), and contrasts that to the distribution of funds by CureSearch. The key points include;
    • only 2.96% of ACS funds are directed toward ALL types of childhood cancer
      • 37% of the ACS budget goes to 3 cancers which have a 90 to 99% five year survival rate, prostate, breast and melanoma
    • only 27% of all LLS fund are directed to research towards ALL cancers (adult and childhood) so one can expect that the childhood cancer funding is similar to the ACS
    • CureSearch distributes 100% of its program expenses directly towards childhood cancer research.
    • Funding for childhood cancer from the National Cancer Institute, with an annual budget of $4.7 billion, was $180 million, or about 3.8% of its budget in 2006. And this is not solely for research.
  2. Lies, damn lies and statistics - this PAC2 article introduces the concept of Person Years Life Lost (PYLL) and compares the funding dollars for the major adult cancers to the funding dollars for all childhood cancer on a "normalized" basis of PYLL. The key points include;
    • PYLL is the average age of death in the US minus the average age of death from a disease. It is used by public health officials as means to see where funding can provide the best "value", or add the most years of life. Unfortunately, it does not seem to be used by people distributing funding for childhood cancer.
    • The average age of diagnosis for the 10 most prevalent adult cancers is 65 years old. The average age of death in the US is 77 years old. So, the average PYLL for the top 10 adult cancers is about 12 per case.
    • The average age of diagnosis for all childhood cancer is 7 years old. The average age of death in the US is 77 years old. So, the average PYLL for childhood cancers is about 70 per case.
    • The average funding (from the ACS) for the 10 most prevalent adults cancers is $13 million.
    • The funding (from the ACS) for childhood cancer is $4 million.
    • The average funding per PYLL for the 10 most prevalent adult cancers is $40.
    • The funding per PYLL for childhood cancer is $23.
    • Several observations from this evaluation
      • Childhood cancer represents the best value in terms of saving the most PYLL by curing one case.
      • As we know, childhood cancer is relatively "rare", yet the total PYLL from childhood cancer is greater than or equal to 4 of the top 10 adult cancers.
      • The big winners are prostate, with an amazing $896 per PYLL and breast, with $100 per PYLL. Remember, the 5 year survival rate for these two are 99% and 90%! Yet these two account for 1/3 of every funding dollar from the ACS.
      • Despite that, overall funding for childhood cancer, when considering PYLL is shockingly low.
      • $1000/PYLL combined is spent on the two most prevalent cancers of men and women (not including lung). $24/PYLL is spent on childhood cancer.

So why aren't more funds directed towards childhood cancer research?

Childhood cancer is considered "rare". Approximately 12,500 cases are diagnosed every year compared to nearly 1.4 million adult cancer cases. The number of cases makes it difficult if not impossible for pharmaceutical companies to profit from R&D of new treatments. And, despite the funding from the National Cancer Institute, the pharmaceutical industry cumulatively invests more money in research yet this investment historically has all but excluded cancer research for children. “Children will never represent a market force,” says Greg Reaman, MD, chairman of the Children’s Oncology Group.


Why can't we use the adult research and cures?

Children are not little adults. Their developing bodies and organs respond differently to "hand-me-down" treatments used on adults. Typically, childhood cancers are more aggressive. The pharmacokinetics (adsorption, distribution, metabolism and excretion), desired effect, and toxicity can be different between children and adults, which limits the utility of extrapolating data from adult trials. The use of these "hand-me-down" treatments has been proven time and again to result in long term effects including; major organ damage, secondary cancers, infertility, and developmental problems among others.


Childhood Cancer - The Future

There are tremendous men and women doing tremendous research to cure childhood cancer.  The Children's Oncology Group, thousands of doctors, nurses and other experts who treat children with cancer, as well as scientists who discover new treatments in the laboratory is a collaborative effort of of over 200 top medical institutions across the United States to coordinate research trials, data and findings. This information is shared across the entire membership. Because there are so few cases this is key to determining what works and what doesn't, and to evaluating what direction future research should take. In addition, there are so many other tremendous organizations researching and fighting for a cure. On both a national and local level.


But these people need money to do the research. There are hundreds if not thousands of fundraising organizations out there giving you the opportunity to participate and raise funds.


It is my contention that increased awareness will ultimately lead to increased funding from corporations. That is why PAC2 started and the fundamental basis for the mission of PAC2.

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