Facing a new diagnosis
If you or a loved one has recently been diagnosed with chordoma, 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.
The steps on this page are meant to help people with a new chordoma diagnosis find the information and resources you need to understand chordoma and get the best care possible. Come back to this page any time you feel like you’re lost, overwhelmed, or need some direction on what step to take next.
Step 1. Contact our Patient Navigators
Learning you have chordoma can be overwhelming. Our Patient Navigators provide free, confidential, one-on-one support to help you learn about your new chordoma diagnosis, understand the treatment guidelines, locate chordoma experts, connect you with others, and arm you with resources so you can become your own best advocate. We are here with you every step of the way.
Step 2. Learn about chordoma
If you’ve just been told you have chordoma, you’re probably asking what is chordoma, how do I make a decision about my treatment options, and where do I go to get the best care?
Knowledge is power when it comes to dealing with chordoma. The pages, resources, and videos below contain information you need to know about the disease so you can make the most educated decisions about your care.
General information about the disease including who is affected, causes and risk factors, tumor locations, and subtypes.
Booklets and pamphlets containing treatment information and guidelines available for download or as printed copies.
Short videos with helpful information from chordoma medical experts and community members.
Information specific to children and young adult patients (up to age 35 years).
Answers to questions commonly asked by chordoma patients and caregivers.
Videos of past community conferences, including Ask the Expert Q&A panels.
Step 3. Plan your treatment
Your first treatments will have a major impact on your outcome. It is very important to evaluate your options carefully by getting multiple opinions from doctors who have experience treating chordoma. Chordoma tumors typically grow slowly, so unless your doctors are saying you are in immediate or critical danger, you have time to decide what to do to get the best treatment. Our treatment pages will help you learn about the way chordoma should be treated and our Doctor Directory can help you locate chordoma experts.
When seeking multiple opinions, it is helpful to organize your medical records to share with the medical specialists you consult. This includes lab and test results, imaging reports, and visit summaries. Some specialists may request this information in advance of your appointment and others may want you to bring it to your appointment. You can gather this information yourself, or use an online service such as Ciitizen or Picnic Health. These services work on your behalf to request, collect, and store your medical records in secure online platforms that can then be shared with anyone you choose, including family and healthcare professionals.
Participate in the Natural History Study of Rare Solid Tumors
The chordoma community is one of a number of rare cancer communities that has been invited to participate in the Natural History Study of Rare Solid Tumors, currently underway at the U.S. National Cancer Institute (NCI). The purpose of this important study is to collect clinical and biologic information including tumor tissue samples from patients with rare solid tumors, such as chordoma, to better understand how these tumors develop and grow. By taking part in this Natural History Study you can help speed the identification and development of new treatments by giving researchers the information they need to make progress. Any chordoma patient, including those in active treatment, can participate in this study from wherever they are in the world.
Step 4. Stay up-to-date
Chordoma Foundation e-newsletters and periodic email updates are a great way to stay connected with us and get the latest news. You will hear about research advances, clinical trial news, fundraising initiatives, and events like our community conferences. Sign up to receive our emails so we don’t lose touch.
Step 5. Connect with the Chordoma community
Connecting with others who have been through their own journey with chordoma can provide you with support, perspective, and encouragement when dealing with a chordoma diagnosis. Some ways to find support include:
Our private online community, Chordoma Connections, is a place for all those affected by chordoma to connect with and support each other. No matter where you are in your journey with chordoma, your role in that journey, or your location in the world, there is a place for you in Chordoma Connections. Join the community today!
Support from someone who has been there can make all the difference. Peer Connect is a free, confidential peer-to-peer support program that connects anyone touched by chordoma with another person whose experiences with chordoma are similar. Peer Guides are available to support patients who are newly diagnosed, patients in active treatment, survivors, caregivers, family members, or friends.
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Our regional and international community conferences provide unique opportunities to hear directly from leading chordoma doctors and researchers, learn more about the work of the Foundation, and connect with a community of peers who share similar experiences.
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Newly diagnosed chordoma patients, survivors, and family members can connect with others in a closed/private support and survivors group on Facebook that is hosted by members of the chordoma community. This close-knit community exists to help answer questions, share personal experiences, offer guidance, and serve as encouragement throughout your journey with chordoma. There are over 2,400 members in 83 countries in this private/closed forum and when you join, you’ll be asked to answer simple questions that only group moderators can see. Note posts within the group are visible only to group members.