Chordoma Foundation

Expert Recommendations for the Diagnosis and Treatment of Chordoma

Expert Recommendations for the Diagnosis and Treatment of Chordoma edits 12.09.2015_Page_01What should I do? If you or someone you know has chordoma, you’ve probably found yourself asking this question. And it’s an important question to ask, because, when it comes to treating chordoma, what you do — or don’t do — can have a major impact on your life.

We developed this booklet to help you make informed medical decisions and get the best care possible for yourself or your loved one. It contains recommendations developed by a group of over 40 leading doctors who specialize in caring for chordoma patients. The Chordoma Foundation, along with the European Society for Medical Oncology, convened this group to reach agreement on the best ways to manage chordoma based on all available evidence. The resulting expert recommendations were published in 2015 in the leading clinical oncology research journal, The Lancet Oncology. We believe that it is also very important to make these recommendations available to patients and caregivers in a format that is understandable and usable, which is why we created this booklet.

In this booklet, you will find information about how chordoma is diagnosed and tests to get before and after treatment. You will also learn about best practices for treatment and what to expect after treatment. Our hope is that this resource arms you with the knowledge that will help you win your fight against chordoma. Should you have any questions as you read through this information, please request help and a patient navigator will gladly assist you.

The booklet is available electronically in English, Chinese (Mandarin), Dutch, Italian, Japanese, and Spanish. Hardcopies of the booklet are available in English and Spanish.

Request a booklet 

Please complete the form below to download a PDF of the booklet or request a hard copy sent by mail.

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You may also access The Lancet Oncology paper or request help from a Patient Navigator, and download additional educational materials.