Types of bone cancer
Chordomas are a very rare, slow growing type of primary bone cancer. Chordomas develop from cells formed early on when a baby's spine is developing in the womb. These are called the notochord cells.
During development, the notochord cells get replaced by bone. But sometimes, small areas of notochord cells may remain in adults.
About 30 out of 100 chordomas (about 30%) grow in the base of the skull. Around 50 out of 100 (around 50%) grow in the bone at the bottom of the spine (sacrum) between the hip bones. The rest develop in the bones of the spine.
Chordomas are a very rare type of cancer, so it is more difficult for doctors to find out what the causes might be. They are more common in men than women and are usually diagnosed between the ages of 40 and 60.
Chordomas tend to be slow growing so people tend to have symptoms for many months before they are diagnosed. The symptoms you have depend on where the chordoma is.
You might have:
double vision
headaches
weakness
paralysis in your face
You might have hoarseness of your voice or difficulty with swallowing.
You might have:
pain
difficulty passing urine
weakness in your legs
Your doctor will examine you and you may have blood tests to check your general health. Other tests might include a:
CT scan
MRI scan
PET-CT scan
biopsy
Find out more about having these tests
Your treatment depends on where the chordoma is and how big it is. It's important your chordoma is treated as soon as possible. This helps reduce the chance of it coming back (recurring).
You might have an operation to remove your tumour. Or you might have surgery to remove as much of the tumour as possible. This is called debulking surgery.
You might have a type of radiotherapy called external radiotherapy. It directs beams at the cancer cells to destroy it from outside of the body.
After surgery some people go onto have radiotherapy. The aim of radiotherapy after surgery is to kill off any cancer cells that have been left behind. This is to lower the risk of the chordoma coming back.
If you can't have surgery, you might have external radiotherapy as your main treatment. The aim is to shrink the tumour and relieve any symptoms you might be getting.
Some people might have a type of external radiotherapy called .
It’s common for chordoma to come back in the place it first started or close by. This is called local recurrence.
Treatment for local recurrence may include one of more of the following:
surgery
radiotherapy
a cancer drug such as imatinib
treatment using the extreme cold to destroy cancer cells (cryotherapy)
Find out more about these treatments
You have regular appointments with your healthcare team after treatment finishes.
You usually have an examination at each appointment. They also ask:
how you are feeling
whether you have had any symptoms or side effects
if you are worried about anything
You also have regular MRI scans.
How often you have check ups depends on your individual situation.
Researchers are looking into chordomas and want to find out:
how they might develop
if there are newer treatments
There may be fewer clinical trials for rare types of cancer than for more common types. This is because it is hard to organise and run trials for rare cancers. Getting enough patients is critical to the success of a trial. The results won't be strong enough to prove that one type of treatment is better than another if the trial is too small.
Go to Cancer Research UK’s clinical trials database if you are looking for a trial for chordoma in the UK. Talk to your specialist if there are any clinical trials that you think you might be able to take part in.
Coping with a diagnosis of cancer can be difficult, both practically and emotionally. It can be especially difficult if you have a rare cancer. Being well informed about your cancer and its treatment can make it easier to make decisions and cope with what happens.
Talking to other people who have the same thing can help. But it can be hard to find people who have had a rare type of cancer.
Find out more about rare cancers
Cancer Research UK’s discussion forum is called Cancer Chat. It is a place for anyone affected by cancer. You can share experiences, stories and information with other people who know what you are going through.
Chordoma UK provides information and support through an online community. They also fundraise to support research into chordoma.
Find out more about Chordoma UK
The Chordoma Foundation is an international online support group that has a message board where you can get in touch with other people with chordoma.
Go to the Chordoma Foundation website
This organisation provides information, support and counselling for people with primary bone cancer and their families. They also have a financial assistance grants service. They promote research into the causes and treatment of primary bone cancer, in particular osteosarcoma and Ewing sarcoma.
Telephone: 0113 258 5934 Support and information line: Freephone 0800 111 4855 Monday to Friday 9am to 5pm
Visit the Bone Cancer Research Trust website
This organisation provides support and information for people with neurological conditions and their relatives. It also produces free booklets on these conditions, including brain and spinal tumours.
Helpline: 0808 808 1000 Email: helpline@brainandspine.org.uk
Last reviewed: 11 Feb 2025
Next review due: 11 Feb 2028
You usually have a number of tests to check for cancer that starts in the bones. This includes scans and having a sample of bone tissue taken (a biopsy).
Proton beam therapy is a type of radiotherapy treatment. It uses high energy or low energy proton beams to treat cancer.
We don’t know what causes most bone cancers. But there are some factors that may increase your risk of developing it. Find out what these may be.
Coping with cancer can be difficult. There is help and support available. Find out about the emotional, physical and practical effects of cancer and how to manage them.
Rare cancers affect a small number of people. In the UK and Europe experts say it is rare if fewer than 6 in 100,000 people are diagnosed each year. Find out more about rare cancer.
Primary bone cancer is cancer that has started in any bone of your body.
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What to ask your doctor about clinical trials.
Meet and chat to other cancer people affected by cancer.
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