Chordoma Foundation International Community Conference and Research Workshop As mission statements go, the Chordoma Foundation’s seems simple: “To improve the lives of those affected by chordoma and to lead the search for a cure.” Though seemingly “simple,” a deeper acquaintance with the Foundation and its achievements tells a story that is inspirational. From its beginnings in 2008 around a dining room table, the Foundation has fostered progress in the understanding of chordoma and its treatment at speeds not typical in science and medical research. The Director of the Chordoma Foundation is Josh Sommer, a chordoma survivor. To learn more about Josh’s story and the Chordoma Foundation, please see Winter 2016 issue, which can be found online (https://eyeandear.org > Media > Center for Skull Base Surgery). Dr. Paul Gardner of the UPMC Center for Skull Base Surgery was a panelist on “Ask the Experts” at the Summer 2016 Chordoma Foundation Community Conference. Surgeons, oncologists, and researchers analyzed and debated hormonal therapies, proton beam therapy, targeted therapies, systemic therapies, chordoma recurrence, metastasis, biopsy for chordoma, tumor behavior, pediatric chordoma, and research advances. Patients and physicians in attendance posed questions and challenges to the panel at the conclusion of the nonstop, hour-and-a-half session.
Below, left to right: Paul Gardner MD, Silvia Stacchiotti MD, Chris Heery MD
A sampling of the thought-provoking discussions in the session:
4
Josh Sommer, above, is founder of the Chordoma Foundation - a chordoma survivor and unflinching advocate for scientific advancement in understanding this disease.
“One of the limitations with preoperative radiation of a skull base tumor is how close it is to the brain or brainstem.”
“The surgeon might need a very specific sequence of images or specific contrast agents prior to tumor removal.”
“Hormones depleted by radiation must always be replaced.”
“Among the experts there is not yet complete agreement on the best follow up approach after treatment.”
“In pediatric chordoma, you want a specialist who understands the disease along with a specialist who understands the child.”
“The risk of tumor seeding is very low in skull base tumor surgery with the endoscopic endonasal approach.”