Getting the best care
How do I make sure I get the best care possible?
If you or someone you love is dealing with chordoma you’ve probably found yourself asking this question.
The Chordoma Foundation is here to help. We believe passionately that every chordoma patient should be able to make informed decisions that will lead to the best possible outcomes. We can assist you with information, support, and resources to help you understand chordoma and get the best care possible. No matter the stage of your disease, this page provides some important points to keep in mind while you are learning about your options and making decisions.
Key Treatment Principles
Whether you are newly diagnosed, experiencing a recurrence, or have advanced or metastatic disease, the most important thing to do is find a medical center with a multidisciplinary team of experts who have substantial experience treating chordoma patients.
Chordoma is a rare disease, and it affects very important and complex parts of the body. For these reasons, appropriate diagnosis and treatment of chordoma requires very specialized care provided by multiple specialists who work together to coordinate your care. This team approach involving multiple specialists is called multidisciplinary care. It is typically only found at larger hospitals that see large numbers of patients, and is not available at most local hospitals. These centers are sometimes called referral centers.
- Radiation oncology
- Medical oncology
- Palliative care
Help researchers learn more about chordoma and speed the approval of treatments by participating in NCI’s Natural History Study
Chordoma patients have the opportunity to contribute to the understanding of chordoma and other rare diseases by participating in the Natural History Study of Rare Solid Tumors, currently underway at the U.S. National Cancer Institute (NCI). The purpose of this study is to better understand how rare cancers behave over time — their “natural history” — to inform better treatment approaches and the design of new clinical trials. Chordoma is one of the first rare tumors to be included in this study. Any chordoma patient, including those in active treatment, can participate in this study from wherever they are in the world.
Take your time. There’s a lot to learn.
The doctor and treatment plan you choose will have a major impact on your outcome. It is important not to rush to a decision before you learn about all your options. 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 so you can be well-informed when you speak with doctors.
Types of treatment
|Systemic therapy||Advanced or metastatic disease|
|Clinical trials||Palliative and supportive care|
The best way to ensure that you make the most informed decision about your care is to consult with multiple doctors who have substantial experience treating chordoma. Good doctors are not offended by this reasonable step, as second opinions are important for rare and complex diseases like chordoma.
For each chordoma patient, there may be multiple treatment options, each with different risks and benefits. Different doctors may recommend different treatment approaches. If you get conflicting recommendations from two specialists, consider getting a third or fourth opinion. It is important to understand all your options before you make a decision.
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.
Questions to ask about treatment
To help you get the best care possible, we developed lists of questions with the input of chordoma patients and caregivers that can help you think about what you want to ask your doctors.
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.
Advice from a chordoma survivor
The chordoma community is full of wisdom about how to deal with this rare disease. Read “The Seven Habits of Highly Effective Patients”, an empowering resource with words of advice and encouragement.
Remember, you are not alone.
There is a community of chordoma patients, survivors, caregivers, co-survivors, and loved ones here to support you. Connect with others for support, perspective, and encouragement.
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.
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.
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.
The information provided herein is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your or your loved one’s physician about any questions you have regarding your or your loved one’s medical care. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website.