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Understanding chordoma

Get the best care

These steps can help you make the most informed decisions about treatment so you get the best care possible.

Whether you're newly diagnosed, facing a recurrence, or dealing with advanced disease, this page will guide you through the steps of learning about your options, finding care, and getting support.

We want you to know that you are not alone. The Chordoma Foundation and many chordoma survivors are here to support you throughout your entire journey with chordoma, from diagnosis through to survivorship. We believe passionately that every chordoma patient should be able to make informed decisions that will lead to the best possible outcomes.

Come back to this page any time you feel like you’re lost, overwhelmed, or need some direction on what step to take next.

You are not alone

Tips and advice from chordoma survivors

Be your own advocate. Each patient’s situation is unique and, while your doctors can help you understand the various treatment options available to you and give you their recommendations, you are the best one to advocate for yourself to make sure you get the best care possible. Learn everything you can, figure out what questions you have, get answers to those questions, and ask for what you need and want.

Take notes. Keep a notebook with you at all times, and write down everything. Dealing with a new symptom? Something doesn’t seem right? Have a question that you thought of AFTER an appointment? Write it all down. Take the notebook with you to your appointments so you can discuss what you've written and take notes on what the doctor says.

Bring a family member or friend to your appointments. A new diagnosis of chordoma can be very overwhelming to handle alone. Learning about chordoma, setting up consultations with doctors, managing symptoms, thinking about the future, etc can make you both physically and mentally tired. If possible, having a friend, family member, or someone else you trust accompany you to your appointments can be very helpful when it comes to taking notes, asking questions, and understanding next steps. Having someone else with you can help ease the burden of taking notes, asking questions, etc. while you are talking with the doctor and processing what's being said.

Ask for help. Being diagnosed with a rare disease like chordoma can lead to feelings of loneliness and isolation. Don’t be afraid to ask for help — whether you reach out to a Chordoma Foundation Patient Navigator, join a support group, connect with other chordoma patients online, or talk with your family and friends, it is important to have a support system in place to help you navigate the journey ahead. We often hear that family and friends are desperate to help, but may not know how. It will give them hope and comfort if they can help you — and you get something in return. One idea is to make a list of things that people can do — bring you groceries, mow your lawn, pick your kids up from school — then share the list and let them choose.

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