About Childhood Cancer
Cancer is the second leading cause of death (behind accidents) among children. In the United States, more than 12,500 new cases of cancer are diagnosed in children and adolescents every year. This means that one out of every three hundred children will be diagnosed with cancer before the age of twenty. Unfortunately, twenty-five hundred children and young adults will die each year from this devastating disease.
About Bone Cancer
Although tremendous advances in therapy have contributed to a dramatic overall decline in mortality from childhood cancer since 1975, the prognosis for those children diagnosed with bone cancer remains dismal. In contrast to other forms of cancer such as leukemia and lymphoma, which have a cure rate of greater than 75%, the disease-free survival rate beyond five years for children diagnosed with bone cancer drops to less than 30%, one of the lowest rates among all of the cancers that affect children.
Osteosarcoma & Ewing’s Sarcoma
What is unique about bone cancer is that unlike other cancers, which occur in both pediatric and adult populations, bone cancers primarily target children and adolescents. The two most common bone cancers are osteosarcoma and Ewing’s sarcoma. Together they account for 90% of all bone tumors in children year, approximately 700 children and young adults in the United States will come face to face with this diagnosis.
The Importance of Awareness
Difficulties arise in the diagnosis and treatment of adolescents with bone sarcomas. The most frequent initial symptoms of bone cancer are pain and swelling in the bone, tenderness to the touch, and occasionally, fever. These children and young adults (and their families), unaware that these symptoms might be cause for alarm, often ignore them or attribute them to some other more apparent cause, such as a sports injury. Children in this age group often feel invincible and consequently choose not to acknowledge or report any physical problems or symptoms. Lack of insurance coverage particularly at the upper range of this age group also may result in failure to seek medical attention. Delayed diagnosis can make the critical difference between life and death.
Research & Treatment Challenges
Once diagnosed, effectively treating bone sarcomas remains a tremendous challenge. While there have been major advancements made in the treatment of many types of cancers, shockingly there have been no new drugs or improvements in drug regimens used in the treatment of pediatric bone cancer in more than fifteen years. This situation is due, in large part, to a lack of financial commitment to support laboratory and clinical research in the area of bone cancer. As a consequence, bright, young investigators potentially interested in bone cancer research are forced to pursue other interests where outside funding is more readily available. Additionally, since the overall incidence of bone cancer is lower than that of many other tumors--in part because this disease is not found in the adult population--pharmaceutical industry efforts have been directed toward the development of drugs that target diseases where there is more potential profitability. In fact, a recently developed drug known as MTP, which exhibited exciting promise in the treatment of osteosarcoma, is no longer being produced for this very reason. It is heart wrenching when a drug that can save lives and help children with cancer is eliminated due to these kinds of financial issues. Treatment of pediatric bone sarcomas is further complicated by the fact that these cancers specifically target adolescents. As children reach adolescence, they enter the most tumultuous physical and psychosocial phases of development. When faced with a diagnosis of bone cancer, they must deal with life-threatening issues at the same time they are experiencing these difficult and unique life (and body) changes. Thus, their social, psychological and medical treatment needs are very different than those of younger children and older adults.
Rehabilitation Challenges
Even when successful, the treatment of childhood bone cancer is associated with acute and long-term side effects that have consequences for the maturing young adult. Some patients require surgical treatment of their tumor necessitating amputation, limb reconstruction and/or multiple surgical procedures. The acute and long-term side effects of chemotherapy and radiation therapy are not trivial, and the psychological effects and societal issues facing survivors are emerging as problems as well (e.g. reproduction, sexuality, education, insurability, employment, etc.).
Our Challenge
Unfortunately, adolescents, the age group most often affected by bone cancer, are a population whose uniqueness is often overlooked. Doctors and researchers historically have divided cancer patients into two demographic categories: adults and children. Yet adolescents do not fit neatly into either category. Recognition of the differences and a more age-specific approach to treatment are essential to the care of the adolescents who face this diagnosis. Without greater awareness of childhood bone sarcomas and increased funding to support targeted research and treatment, the medical community will continue to gloss over the nuanced needs of this patient population, and there will be little progress toward turning the hope for a cure into a reality.