Duke Student Fights Chordoma Searching Treatment

Armen Hareyan's picture

Josh Sommer was diagnosed with Chordoma cancer in his freshman year at Duke University and did not know much about this disease; however, now with his mother Dr. Simone Sommer he is leading an international foundation to find cure and treatment for Chordoma.

"We were disappointed to find out that chordoma is a disease that falls through the medical cracks," Dr. Sommer said. "We needed to create an organization that bridges the gap between patients, researchers, care givers, government agencies and pharmaceutical companies working together to find a cure," continues Dr. Sommer in quote from Duke Chronicle.

Researching the disease Josh realized the enormity of the challenge to cure chordoma, and that to have a real shot at success would require a massive, coordinated team effort involving scientists and doctors working hand-in-hand with patients towards this common goal. "To build the team necessary to cure chordoma, my mother, Dr. Simone Sommer, and I contacted the leading chordoma researchers throughout the world and experts in related areas of cancer research. We found that overwhelmingly researchers were eager to study chordoma, but were hindered by three key factors: 1) limited access to tissue and cell lines, 2) scarce funding, and 3) little communication and collaboration among and between physicians and scientists."

In his readings Josh finds that one of the world's leading chordoma researchers - Michael Kelley, MD - is right next door at Duke. "Shortly after returning to school, my mother and I met with Dr. Kelley to lay out our vision to rapidly advance chordoma research and to see what we could do to support his projects. The next week I began working in Dr. Kelley's lab."

Josh writes in Chordoma Foundation's website that the foundation gives him hope that new treatment's will be developed in time to save his life, and the lives of the many chordoma patients has come to call friends. To succeed, the Foundation needs your support and the support of the entire chordoma community. "I view every chordoma patient, family member, doctor and research as team-mates in the search for a cure. I welcome you to join our efforts in any way you can. Working together, we can turn our dreams for a cure into reality."


Chordoma* is a rare tumor that usually occurs in the spine and base of the skull. It is a malignant tumor that grows fairly slowly. It can spread to other organs, usually the lungs. It represents only about 1 percent of all malignant bone tumors.

Treatment of chordomas is very difficult. This is mainly because these tumors are near the brain and spinal cord. Traditional chemotherapy has not been very effective.

Surgery is preferred, where possible. Radiation in combination with surgery is often used to treat these tumors. Radiation alone rarely cures the tumor. When tumors cannot be surgically removed, sometimes radiation therapy can stop the growth of the tumor.

Surgery is the best treatment for chordomas, but in many cases it can be difficult to perform because of important structures near the tumor. The surgeon must remove the tumor and a margin of normal tissue around it.

This often results in a loss of neurologic function. For example, surgical removal of tumors in the sacrum can result in loss of control of bowel and bladder function (incontinence).

Fifty to seventy-five percent of patients treated with surgery will be alive after five years.

* Based on American Academy of Orthopaedic Surgeons Information.



Have you ever known them to be fast growing (ie returning to same size within 3 months following surgery) instead of slow growing? Where can we get advice/support from regarding surgery? Do you have any contact details for Michael Kelley? Thanks
My husband has chordoma, found in 2007. His was found in his shoulder blade, it has been removed.We have 3 young kids.No one knows what has caused this.I worry about my kids.Please let me know if you or any one you know can tell me ,what is the chance that they may develope this later in life? Thanks and god bless Desiree
My mother has Chordoma of the spine she has had two surgreys first in 2007 and 2008. Chordomas are not hertitary, My mother was back at the Drs. yesterday and was told that she has 3 more tumors on her rectom and bowels and possibly on her lungs. Chordomas are suppose to be a slow growing cancer but in her case it has not. I have asked the drs. about myself and my children and was told that it is not hertitay, My prayers are with you and your family. Vickie
surgically removed chordoma - reoccuring in 5 months