On July 22, a panel of chordoma experts came together for a live, 90-minute webinar to answer questions about chordoma care and treatment from more than 100 patients and caregivers. A virtual adaptation of one of the most popular sessions at our annual Chordoma Community Conferences, it was the third webinar in our 2021 Virtual Chordoma Community Conference Series. A recording of this session is now available on YouTube.
The multidisciplinary panel of experts represented a range of institutions around the U.S. with expertise in treating chordoma patients. Moderated by Ed Les, MD, a clival chordoma survivor and Chordoma Foundation Board member, the panel included:
Ziya Gokaslan, MD – Spine Neurosurgeon; Brown Medical School and Lifespan Hospitals
Vinai Gondi, MD – Radiation Oncologist; Northwestern Medicine Chicago Proton Center
Mrinal Gounder, MD – Medical Oncologist; Memorial Sloan Kettering Cancer Center
Erin McKean, MD – Otolaryngology Surgeon; University of Michigan Health System
Key themes and questions covered by the experts included:
- Getting a second opinion should be your first order of business. One of the most important predictors of positive outcomes in chordoma is getting the right initial treatment from a physician experienced in treating chordoma patients. Patients and families should feel comfortable that they’ve made the right decision before choosing their path, and that takes knowledge and trust. Don’t be afraid to speak up. The network of providers with expertise in chordoma worldwide is growing, and many will actively connect and collaborate to improve patient care.
- The technology of genetic sequencing is evolving and may help map out a treatment plan for advanced disease. Though the value of getting your tumor genetically sequenced depends on the context, timing, and type of test you use, many experts recommend sequencing a chordoma if it comes back (recurs). The purpose of sequencing the tumor is to identify therapies or clinical trials worth pursuing for advanced or metastatic disease when surgery and radiation may no longer be options.
- Systemic therapies are one option for treating locally advanced or metastatic chordoma. Currently, there are no federally approved systemic therapies for chordoma. However, doctors in some countries can still prescribe treatments to chordoma patients that are approved for other cancers. For patients whose tumors have come back or spread to other parts of the body, systemic therapies may be an option if surgery or radiation is not possible. Patients with advanced or metastatic disease should consult with a medical oncologist who has experience treating chordoma to discuss their options. More information is available on our drug therapy page and on the drug therapy options page.
- Radiotherapy aims to stunt the growth of tumors as durably and for as long as possible. This typically means treating with as high a dose as possible. Work with a radiation oncologist with chordoma expertise to find out which type of radiation will be best for your individual situation. Talk with your radiation oncologist to discuss your questions and priorities before deciding. More personalized radiation decisions may now be possible for some patients through genetic tumor testing.
- Surveillance of chordoma is a lifelong process. After initial treatment, regular scans – typically every few months in the first year, every 6 months for 5 years, and once a year after that – are essential for early detection of any recurrences. Unfortunately, chordoma can return many years (even decades) after treatment, so it is important to stay vigilant. While the run-up to scans can feel stressful, it does get easier, and your care team is here to help.
Contact a Chordoma Foundation Patient Navigator
Chordoma Foundation Patient Navigators provide personalized information and support to anyone affected by chordoma, anywhere in the world, at any stage of their journey. Your Patient Navigator will use their extensive knowledge of chordoma to help answer your questions, provide information about treatment guidelines, help you find qualified doctors, talk with you about side effects, and connect you with others in the chordoma community who have been through a similar journey.