What should I do? If you or someone you know has chordoma, you’ve probably found yourself asking this question. 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 the following chordoma educational materials to help you make informed medical decisions and get the best care possible for yourself or your loved one. To download or request hard copies of these materials, please use the form at the end of the page.
If you or someone you love has been diagnosed with chordoma, Chordoma Foundation Patient Navigators are here to help you get the best care possible. Our Patient Navigators are available Monday through Friday from 8 AM to 5 PM Eastern Time.
Navigating Life with Chordoma Brochure
The brochure is a useful overview of the various services the Foundation has available to patients and provides information on how to connect with us to learn more. We hope the information in the brochure will help you connect with our resources and the chordoma community.
Please complete the form below to download a PDF of the brochure in English.
Expert Recommendations Booklets
The A multidisciplinary, international group of over 60 doctors who have extensive experience caring for chordoma patients. The group is responsible for developing and publishing consensus guidelines, based on all available medical and scientific evidence, for the treatment of primary and recurrent chordoma. is a Treatment that involves a team of physicians from various disciplines. In the case of chordoma, these disciplines include sarcoma or bone pathology, radiology, spine surgery or skull base surgery, otolaryngology, radiation oncology, medical oncology, and palliative care., international group of more than 60 doctors who specialize in caring for chordoma patients. The Chordoma Foundation and the European Society for Medical Oncology brought this group together to define evidence-based recommendations for medical professionals on the best ways to manage chordoma. As part of our commitment to helping chordoma patients and caregivers make the most informed treatment decisions, we have made the recommendations of the consensus group available to you in our Expert Recommendations booklets.
Diagnosis and Treatment of Chordoma
In 2013, the consensus group met and developed guidelines for medical professionals on the diagnosis and treatment of primary chordomas, as well as chordoma tumors that are advanced or metastatic. The resulting recommendations were published in 2015 in the clinical oncology research journal, The Lancet Oncology.
These recommendations are available to you in the first booklet in our Expert Recommendations series. In this booklet, you will find information about how chordoma is diagnosed and tests to get before treatment. You will also learn about best practices for treatment of a new diagnosis, what to expect after treatment, as well as general guidance on advanced or When tumors have spread to other parts of the body from the original tumor site.. We hope this resource provides you with knowledge that will help you make informed decisions about your care.
Please complete the form below to download a PDF of the booklet in English, Chinese (Mandarin), Dutch, Italian, Japanese, or Spanish. You may also request a hard copy by mail (English and Spanish only).
Treatment of Recurrent Chordoma
The consensus group came together again in November 2015 to develop detailed recommendations for treating locally and regionally recurrent chordoma – a complex topic that required in-depth discussion and careful analysis of all available evidence. The resulting guidelines were published in an open-access paper in the high-profile medical journal, Annals of Oncology, in June 2017.
We developed the second booklet in our Expert Recommendations series to make these recommendations available to you. It is intended to answer questions about what to do if your tumor returns and how to get the best care possible. Individuals who have been treated for chordoma in the past and are now experiencing a Tumor that has grown back after initial treatment. Recurrences can be isolated or multifocal, local or regional. (tumor regrowth) will benefit most from this comprehensive booklet. Helping to illustrate the treatment guidelines throughout the booklet are a series of flowcharts which walk you through the suggested tests, treatment options, and follow-up steps recommended for different recurrence scenarios.
Please complete the form below to download a PDF of the booklet in English, Spanish, Dutch, French, German, Italian, or Mandarin. You may also request a hard copy by mail (English only). Additional translations may be available in the future.
Treatment Information Series
This series of pamphlets is designed to provide easy-to-understand information about the different treatments that may be involved in your chordoma journey. The three pamphlets in the Treatment Information Series cover Clinical Trials, The use of drugs that spread through the body to kill cancer cells. Also called chemotherapy or drug therapy., and Pain Management. You can use these pamphlets to:
1. Learn about treatment options and when they apply to chordoma
2. Understand common terms you may hear from your healthcare team
3. Consider how to weigh the risks and benefits of different treatments for your particular situation
4. Take the next step and talk with your doctors about what’s right for you
Download or request a resource
Chordoma Foundation educational materials are for informational and educational purposes only. They are not a substitute for professional medical advice, diagnosis, or treatment. All care and treatment decisions should be made in consultation with a physician or other qualified health care professionals who are familiar with your or your loved one’s specific health situation. Always seek the advice of your physician for any questions you may have regarding your or your loved one’s medical care. Never disregard professional medical advice or delay in seeking it because of something you hear in a video or read on this website.
We are grateful for the support of Celgene in helping to make our Educational Materials possible.