National guidelines in the UK recommend that anyone with a bone cancer such as chordoma should be referred to a specialist centre for further assessment and treatment. Your child is likely to be referred to one of these centres – this may mean you and your child will have to travel some distance for treatment.

The centre at which your child will be treated will depend on the location of their chordoma.

The base of the skull and the bones of the neck (known as the cervical spine) are the most common locations of chordoma in children. Due to the proximity of these areas to the brain and spinal cord, these chordomas are generally treated in specialist neurosurgical units.

If a chordoma presents in the bones at the bottom of the spine (sacrum and coccyx regions, or tail bone) then the patient is generally treated in one of five specialist bone cancer centres in England, which are located in Birmingham, London, Newcastle, Oswestry and Oxford.

Patients in Wales and Northern Ireland can be treated in any of the UK specialist centres. Patients in Scotland will be treated in Glasgow, Edinburgh, Aberdeen, Dundee and Inverness.

If chordoma presents in the mobile spine – the middle section of the vertebral column – then it may be treated in a spinal or neurosurgical unit.

Chordoma affects very important and complex parts of the body such as the brainstem, spinal cord and important nerves and arteries. Treatment is therefore complicated and requires very specialised care provided by multiple types of doctors. Your child’s care will be managed by a team of experts from a wide range of healthcare professions known as a multidisciplinary team (MDT).

The MDT may include:

  • a paediatric oncologist (cancer specialist)
  • a clinical oncologist (radiotherapy and chemotherapy specialist)
  • a paediatric surgeon
  • a pathologist
  • a radiologist
  • a nurse specialist
  • a physiotherapist
  • a pharmacist
  • a dietitian


The treatment of chordoma usually involves a combination of surgery and radiotherapy, dependent on the age of your child. More rarely, chemotherapy may also be involved.

Due to the rarity of chordoma, treatment options are usually tailored to the child’s situation – no standardised treatment protocol exists. In order to try and prevent or prolong the time to relapse/recurrence, treatment of chordoma must be aggressive.

Your child’s doctor and members of the MDT will discuss the options with you in depth. Lean into their knowledge, expertise and support – they are there for you.

Surgery and radiotherapy

It might be recommended by the MDT that your child has surgery to remove as much of the chordoma as possible. Afterwards, they might recommend a course of radiotherapy. The aim of radiotherapy is to kill off any cancer cells that have been left behind after surgery with the aim of lowering the risk of the chordoma coming back.

The decision to give radiotherapy will be based on a number of factors:

  • your child’s age
  • location of their chordoma
  • type and size of their chordoma
  • success of the surgery

Radiotherapy can cause side effects. Doctors are looking at new ways of giving radiotherapy to reduce these side effects, while still treating the chordoma. One of the newer ways of giving radiotherapy uses a different type of beam called a proton beam, which can deliver a higher dose of radiation straight to the cancer cells and less to the surrounding healthy cells.

The US and some countries in Europe are testing proton beam radiation in the treatment of chordoma. At the moment proton beam radiotherapy for chordoma is not available in the UK. If this treatment is suitable for your child the NHS can arrange for treatment abroad, usually in the US.


If your child has poorly differentiated or dedifferentiated chordoma, chemotherapy may be recommended along with, or in place of, surgery and radiotherapy.

Chordoma is generally a slow-growing cancer which means it usually does not respond to chemotherapy (which attacks rapidly dividing cells). However, there is some published evidence that chemotherapy may be effective in treating poorly differentiated and dedifferentiated chordoma using drugs used in the treatment of sarcoma, another type of bone cancer. These include the drugs doxorubicin, ifosfamide, etoposide, vincristine, and cyclophosphamide.

Supportive Care

Your child may experience a number of treatment-related side effects. The MDT will work extremely hard to keep your child as comfortable and as symptom free as they can during treatment. This is called supportive care, and includes pain relief, treatment of infection and drugs to reduce nausea and/or vomiting.

In many parts of the UK, children with cancer are referred to the local children’s hospice team. This team can provide specialist and expert care and advice in the management of your child’s symptoms. This can be very beneficial as it can help make your child more comfortable whilst on treatment.

This page features content originally published by The Chordoma Foundation and is reproduced with permission.
Paediatric and young adult chordoma”