ABOUT EWING SARCOMA*
Ewing sarcoma is the second most common bone cancer in children. It occurs most frequently in the long bones of the legs or arms, the pelvis, chest wall, spine, and the skull, but can also begin in the soft tissues and not involve bone. This disease most often occurs in adolescents, with nearly half of all cases arising between the ages of 10 and 20. Ewing sarcoma is somewhat more common in males than in females. The 5-year survival rates for patients with Ewing sarcoma are between 20 and 40 percent.
“The Ewing Family of Tumors” includes Ewing sarcoma, atypical Ewing sarcoma, and peripheral primitive neuroectodermal (PNET) of bone or soft tissue, and they are all treated in the same manner. A chromosomal mutation can be identified in the tumor cells of the Ewing Family of Tumors. The chromosomal mutation is not part of the genetic make-up of the person with the tumor, it is only in the tumor cells; the tumor is not inherited. The cause of the Ewing Family of Tumors is not yet known but it is believed this mutation plays an important role.
SIGNS AND SYMPTOMS
The symptoms depend on the bone or soft tissue site in which the cancer develops, but they usually include:
• Pain at the site of the mass, often with swelling.
• Patients may have general symptoms such as loss of appetite, fever, malaise, fatigue, and weight loss.
• Other symptoms are related to the specific location of the tumor.
Classic symptoms include chest pain and shortness of breath in tumors that originate in the ribs, and back pain and “sciatic–like” symptoms in patients with tumors in the pelvis.
In Drew’s case, he began experiencing low-back pain in 8th grade, the year he turned 14. Drew was an all-season athlete playing football, basketball, baseball, and running track. Our family pediatrician was sure it was a combination of both growing pains and athletic injury. Ultimately, Drew was misdiagnosed by several practitioners in 2 different health systems. Ewing sarcoma is a very rare cancer. There are only about 200-300 diagnosed cases each year in the United States. The fact is rare pediatric cancers are not necessarily on all practitioners' radar. In addition to our main goal of funding research and clinical trials to ultimately better treat and cure this terrible disease, the Drew Poet Foundation aims to change this fact.