Chordoma is a rare type of bone cancer that forms in the skull or the bones of the spine.
The tumors develop from tissue called the notochord, a structure in an embryo that is important in the development of the spine. These leftover cells in the skull or spine can change over time and become cancerous.
Everyone has notochordal remnants, but only one person in a million is diagnosed with chordoma each year. Approximately one in 125,000 people are living with chordoma at any given time.
In most cases, the main treatment for chordoma is surgery, but radiation therapy may also be used. Even after treatment, chordomas tend to return in the same location. Certain drug therapies may slow or temporarily stop the progression of the disease.
Although many patients can live for a decade or more and some may be cured, the average survival is seven to nine years.
Scientists need tissue from chordoma patients because the condition is so rare. For patients planning to have surgery, they can participate in the Tumor Donation Program and contribute tissue for research.
For more information, visit http://www.chordomafoundation.org/