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 (or the plus sign next to the question) to view the answer.
If you have any questions as you read through this information, please request help and a Chordoma Foundation Patient Navigator will gladly assist you.
A very, very small The dose of radiation delivered during one session of radiation therapy. 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), A histological subtype of chordoma that is more aggressive and usually grows faster than the conventional type. It is more common in children and young adults, and is often characterized by loss of the INI1 protein., A histological subtype of chordoma that is more aggressive and usually grows faster than conventional chordomas. Dedifferentiated chordomas occur in only 5 percent of patients, can have loss of the INI1 gene, and are more common in pediatric patients., and One of the four histological types of chordoma, this term was more commonly used in the past when it was difficult to tell the difference between conventional chordoma and chondrosarcoma. Chondroid chordomas behave similarly to and are treated the same as conventional chordomas. . See Understanding Chordoma for more information on these subtypes.
Experts recommend that your care team include specialists with experience diagnosing and treating chordoma in the following areas:
- Radiation oncology
- Medical oncology
- Care given to improve the quality of life of patients who have a serious or life-threatening disease.
You can learn more about what chordoma patients should look for in a treatment team in the video below.
If a tumor returns after initial radiation, the ability to have further radiation 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 Tumor that has grown back after initial treatment. Recurrences can be isolated or multifocal, local or regional. after radiation should discuss treatment options with their radiation oncologist, and also seek at least one second opinion.
Clinical trials are important treatment options for any cancer patient to consider. Because standard therapies for chordoma are very limited, a clinical trial may provide an opportunity to receive a new, experimental therapy that may be more effective than the currently available options. It is important to remember, however, that the trial therapy may also be less effective than other options. Clinical trials may also make it possible for patients to gain access to clinically available therapies at a much lower cost than paying out-of-pocket for an The practice of prescribing drug treatments that are not approved by government agencies to treat a particular disease. Doctors are allowed to prescribe drugs off-label if they believe it is in the best interest of the patient. therapy. In addition, chordoma patients who participate in clinical trials contribute to knowledge that can guide treatment for future patients and potentially help identify new ways of treating this rare cancer.
Learn more about participating in a clinical trial on this page of our website, as well as the videos below.
If you or your loved one has a tumor that is determined to be poorly differentiated or dedifferentiated, the type of chemotherapy regimens that may be recommended for you include doxorubicin, ifosfamide, etoposide, vincristine, and cyclophosphamide.
Living with chordoma
Additionally, many medical centers have social workers or case managers who can assist patients with practical concerns, such as financial, travel, and lodging assistance programs. If the cost of treatment will be a difficulty, many medical centers have the option to create a monthly payment plan to help you pay for treatment over a period of time.
A Chordoma Foundation Patient Navigator can also help you find assistance programs to consider.
The Chordoma Foundation Peer Connect Program is a free, confidential program that matches you with a trained Peer Guide from the chordoma community to help support you throughout your journey with chordoma. You can apply to be matched with a Peer Guide for support or to become a Peer Guide and provide support.
Chordoma Connections is our private, online patient community where individuals affected by chordoma can come together to exchange information, share experiences, and support one another. Click here to join Chordoma Connections and connect with others in the community.
Chordoma Support and Survivors is a private Facebook group where 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, and serve as encouragement throughout your journey with chordoma. Email approval from a group moderator is required to protect the privacy of the members. Please note: 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.