Frequently asked questions
The following is a list of questions that patients and caregivers often have about chordoma, its treatment, finding support and resources, and getting involved. Click or tap the box containing the question to view the answer.
If you have any questions as you read through this information, please request help and a CF Patient Navigator will gladly assist you.
A very, very small fraction of chordomas are hereditary (also called familial), which means they are caused by genetic mutations passed on to a person by their parents. For more information on familial chordoma, visit our Understanding Chordoma page.
How they appear under a microscope determines the type of chordoma. Chordomas can be grouped into four different types: conventional (also called classic), poorly differentiated, dedifferentiated, and chondroid. See Understanding Chordoma for more information on these types.
For recurrent chordoma, further surgery and/or radiation may be an option depending on where the tumor regrowth is located. It is common for chordoma patients to have multiple surgeries over the course of several years.
For advanced or metastatic chordoma, drug therapy may be used to slow the progression of the disease. There have been some reports of long-term responses to drug therapy; however, there are currently no drugs that are known to be curative and no drugs are approved for use in treating chordoma. Clinical trials are being done to test the effectiveness of new targeted drugs and immunotherapy for chordoma. See the Treatment section of our website for more information about surgery, radiation, and drug therapy options.
Surgery for skull base or upper cervical chordomas should be performed by a neurosurgeon with specialized training in skull base surgical approaches that access the skull base from the nose or mouth (called endonasal or transoral). These surgeries are sometimes done in partnership with an otolaryngologist (ear, nose, and throat surgeon). Chordomas of the mobile spine and sacrum/coccyx should be treated by neurosurgeons or orthopedic surgeons with specialized training in spine surgery.
If a tumor returns after initial radiation, it may not be possible to design a radiation treatment plan that is safe and effective. This will depend on the location of the original tumor, the location of the recurrent tumor, the dose and distribution of radiation that was given initially, and other factors. Patients who experience a recurrence after radiation should discuss treatment options with their radiation oncologist, and also seek at least one second opinion.
The Chordoma Foundation Medical Advisory Board recommends that chordoma patients with recurrent or advanced disease consider clinical trials in consultation with a medical oncologist who has experience with chordoma. Your doctor can help you consider any risks and potential benefits associated with particular clinical trials. Learn more about participating in a clinical trial in this video.
Living with chordoma
The Chordoma Survivors is a private Facebook group where newly diagnosed patients, chordoma survivors, and family members can connect with others in the chordoma community. This close-knit community exists to help answer questions, share personal experiences, and serve as encouragement throughout your journey with chordoma. Email approval from a group moderator is required simply to protect the privacy of the more than 1,700 members. Please send an email briefly describing your relationship with chordoma to firstname.lastname@example.org and you will receive a reply from a group administrator.
*While many members of this Facebook group are involved with the Foundation as volunteers and community advisors, the group is privately run and separate from the Foundation.