Radiation for chordoma
The purpose of radiation therapy is to kill or stop the growth of tumor cells within the body. Below is information about how radiation can be used for the treatment of chordoma.
Role of radiation
Radiation can serve different roles in the treatment of chordoma, which can vary based on the stage of the disease.1 2
Newly diagnosed chordoma
- Reduce the risk of recurrence: Radiation is usually recommended after surgery to kill any remaining tumor cells that are left behind in your body after surgery. In some cases, radiation is given both before and after surgery. This method is typically used for sacral tumors and sometimes mobile spine tumors.
- Main treatment instead of surgery: Radiation is sometimes recommended as the primary treatment following a biopsy if the tumor cannot be removed with surgery or if the risks of surgery are unacceptable to you.
- Curative treatment: If you experience a recurrence and are able to receive high-dose radiation, radiation with or without surgery is an option. In some cases, high-dose radiation can be given for recurrent tumors as part of a treatment plan with curative intent.
- Palliative treatment: If you cannot have high-dose radiation, a lower dose may be given to help slow the growth of the recurrent tumor and ease symptoms you might be experiencing.
Advanced or metastatic disease
- Treatment for individual tumor sites: If your tumor has spread to other areas of your body, radiation can sometimes be given to one or more of the tumors in those areas.
- In combination with systemic therapy: Radiation helps stimulate the immune system to cause it to kill cancer cells, which may help some systemic therapies work better. The combination of radiation and systemic therapies is currently being studied in clinical trials for chordoma.
- Palliative treatment: Low-dose radiation can be used to help slow tumor progression and ease any symptoms you might be experiencing.
If you or someone you love has been diagnosed with chordoma and are considering radiation treatment, our Patient Navigators are here to help you get the best care possible. Our Patient Navigators are available Monday through Friday from 8 AM to 5 PM Eastern Time.
Types of radiation
There are different types of radiation and different ways radiation can be given to treat chordoma.
External beam radiation
Chordomas are generally treated with a beam of radiation that is delivered to the tumor from a source outside of the body. This is called external beam radiation.
Proton beam and carbon ion
Radiation with beams of charged particles, called particle therapy, is generally recommended for treating chordoma because it can be focused very precisely on the tumor.1
Two different types of particles are commonly used: protons and carbon ions. These are usually referred to as proton therapy or proton beam therapy, and carbon ion therapy. It is not yet known whether there is any difference in effectiveness between protons and carbon ions.
Proton and carbon ion treatment centers are very expensive to build, so they do not exist at every medical institution. Proton centers are becoming more common, with centers in the United states and several countries throughout Europe and Asia. Currently, carbon ion therapy is only available in Austria, China, Germany, Italy, and Japan.
In some cases, highly focused photon radiation can be a suitable alternative to particle therapy as long as a high enough dose can be delivered without damaging healthy tissue. Intensity modulated radiation therapy (IMRT) is one type of photon radiation that may be used.
Stereotactic radiosurgery (SRS) and stereotactic body radiation therapy (SBRT) are types of hypofractionated radiation, which may make them important options for recurrent or advanced chordoma. When hypofractionation is used the total amount of radiation given is less than when standard fractionation is used, but the effect should be the same.5
Sometimes it may be helpful to combine particle therapy and photon radiation. For all types of external beam radiation, imaging is needed every day of treatment to make sure that the radiation is going to exactly the right place. This technique is called image guidance.
Another method of delivering radiation, called brachytherapy, involves inserting a small amount of radioactive material inside the body during surgery. This method is not used very often for chordoma, but can sometimes be helpful for delivering a high enough dose of radiation to the area near the brainstem or spinal cord. When used, it is usually given in combination with external beam radiation.1
Dose of radiation
What matters most about radiation for chordoma is that chordomas require very high doses of radiation to be controlled. Specifically, a total dose of at least 74 GyE (Grey Equivalents) is recommended for proton and photon radiation. If the entire tumor has been removed, the dose of radiation to the areas surrounding where the tumor was can sometimes be limited to 70 GyE.1 2
Once you have been treated with a high dose of radiation, it might not be possible for you to have radiation again. If your tumor comes back after your first treatments, the option of further radiation will depend on factors such as the location of the new tumor growth and how long it has been since the previous dose of radiation. Hypofractionated radiation like SRS and SBRT can sometimes make it possible to have further radiation.
Lower doses of radiation are sometimes given to help slow the growth of recurrent or advanced tumors and ease symptoms like pain and nerve damage. Radiation may also be given along with systemic therapies to help increase their effectiveness.2
Any time you are considering treatment it is a good idea to talk with your medical team about the role that radiation therapy should play in your treatment.
Find an expert
To help you find the best care possible we have organized a list of chordoma experts that you can search by specialty, location, and key terms.
What to expect during radiation
Before you begin radiation treatments, you will visit with the radiation oncologist. The doctor will discuss your treatment plan with you, including what side effects you might expect from the treatments. If you have a skull base or cervical tumor, radiation technicians will fit you for a mask that will be used to stabilize your head and neck during the treatments. Something similar may also be done if your tumor is on the thoracic, lumbar, or sacral spine.
The radiation technicians will see you at each visit. You may need to remove certain parts of clothing and then the tech will have you lay down on a special table, called a treatment couch, which is used to accurately position you. If you have a mask, the technician will attach your mask to the treatment couch. This can cause some patients to feel anxious or claustrophobic. If this happens to you, ask your technicians about things other patients have found helpful in dealing with this feeling.
Proton beam, carbon ion, and IMRT photon radiation are typically given in small doses during daily sessions (usually around 35-40) over 6-8 weeks. The dose of radiation delivered during each session is called a fraction. The radiation from each fraction accumulates over time until the total dose is reached. The treatments themselves last just a minute or two.3 6 7
Hypofractionated radiation like SRS and SBRT are given in larger doses over a shorter amount of time (usually 1-5 sessions). This is called hypofractionation. The treatments themselves can last an hour or more, depending on how many sessions are being done.5
During treatment, you will have a check-up with your radiation oncologist every few weeks. After you complete all radiation treatments, your doctors will likely recommend waiting 2-3 months before doing imaging to allow time for any swelling or inflammation that might have been caused by the treatments to subside.
The amount of radiation required to treat chordoma is higher than what healthy tissue can handle. For this reason, it is important for the radiation dose to be focused on the tumor while avoiding important nearby structures such as the brain, brainstem, nerves, or spinal cord. However, even with highly focused radiation like proton beam or carbon ion therapy, short- and long-term side effects are still possible.
Short-term side effects that you might experience during radiation treatments can vary depending on the location of your tumor. A rash and skin irritation at the site of radiation are very common for all patients. Your care team can suggest types of lotion or cream that can help protect your skin and soothe irritation. Nausea and fatigue are experienced by most patients at some point during radiation treatments. Other side effects that might be experienced are listed below.4 7
Skull base patients
- localized hair loss
- mouth and throat irritation
- changes to smell, taste, or hearing
- difficulty swallowing
- blurry vision
Mobile spine patients
- localized hair loss
- throat irritation
- difficulty swallowing
- shortness of breath
- changes in bowel or bladder function
- changes in sexual function
Despite these possible side effects, most patients receiving radiation say they feel good enough to continue daily activities. Patients having proton beam therapy who move temporarily to where the proton center is located often enjoy outings and sightseeing in the local area.
Most of these side effects will resolve after radiation ends. However, some can remain for many months or be permanent. You may also experience “late” effects of radiation, meaning they do not begin until months or years after radiation ends.4 These can include issues with endocrine system function; changes to hearing, vision, or swallowing; bowel, bladder, or sexual issues; and neuropathy including pain, weakness, and numbness in the face or extremities.
Talk with your radiation oncologist about the risks involved in your radiation treatment plan.
You don’t have to accept pain as a normal part of having chordoma. Explore our chordoma pain management resources to learn more about the type of pain you might be experiencing as well as how to get help dealing with it.
Can palliative care help?
Palliative care is very specialized care meant to help patients have the best quality of life possible while living and dealing with a serious illness or disease. A palliative care specialist can help patients and caregivers learn about, engage, and coordinate the services of different specialties that may be needed to manage pain and other side effects, like those listed above. It is recommended that all chordoma patients seek the services of a palliative care team from the time of diagnosis through all stages of treatment and recovery.
Follow-up after treatment
Following any treatment for chordoma, it is very important to maintain a regular schedule of MRIs and checkups with your doctor. These follow-ups will monitor your recovery, assess ongoing quality of life needs, as well as check for new tumor growth.
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.
References and further information
- Stacchiotti S, Sommer J, Chordoma Global Consensus Group. Building a global consensus approach to chordoma: a position paper from the medical and patient community. Lancet Oncology. 2015 Feb;16(2):e71-83. doi: 10.1016/S1470-2045(14)71190-8.
- Stacchiotti S, Gronchi A, Fossati P, et al. Best practices for the management of local-regional recurrent chordoma: a position paper by the Chordoma Global Consensus Group. Ann Oncol. 2017 Jun 1;28(6):1230-1242. doi: 10.1093/annonc/mdx054.
- Radiation therapy to treat cancer. National Cancer Institute website. https://www.cancer.gov/about-cancer/treatment/types/radiation-therapy. Updated January 8, 2019.
- Radiation therapy side effects. National Cancer Institute website. https://www.cancer.gov/about-cancer/treatment/types/radiation-therapy/side-effects. May 1, 2018
- Stereotactic radiosurgery. American Association of Neurological Surgeons website. https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Stereotactic-Radiosurgery. 2019.
- How does proton therapy work? The National Association for Proton Therapy website. https://www.proton-therapy.org/science/. 2019.
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.