This page explains the symptoms, diagnosis and treatment of Ewing sarcoma in children and young people. This information is for the parents and carers of children and young people with Ewing sarcoma.
What is Ewing sarcoma?
Ewing sarcoma is a type of cancer that starts in bones (primary bone cancer). It is the second most common primary bone sarcoma in children and young people.
It most often affects the:
- pelvis
- thigh bone (femur)
- shin bone (tibia)
- ribs
- shoulder blades.
Sometimes Ewing sarcoma can start in the soft tissue near the bone. This is called extraosseous Ewing sarcoma (EES). You may also hear it being called soft tissue Ewing sarcoma. Sometimes these cancers are called primitive neuroectodermal tumours (PNETs).
These are usually treated in the same way as Ewing sarcoma that starts in the bone.
Symptoms of Ewing sarcoma
Symptoms of Ewing sarcoma in children depend on which part of the body the tumour starts in.
Your child may have:
- bone pain that gets worse at night
- a lump or swelling
- stiffness or restricted movement in the joints.
Sometimes doctors find bone cancer after a child breaks a bone that has been weakened by the cancer, even after a minor fall or accident.
Symptoms can sometimes be confused with more common problems in children, such as growing pains.
Diagnosing Ewing sarcoma
If your child has symptoms that could be bone cancer, their GP will examine them and may refer them to a specialist paediatric team. The specialist team will use different scans and tests to see if your child has Ewing sarcoma.
They might have one or more of these tests:
- X-ray: uses X-radiation to take images of dense tissues inside the body, such as bones or tumours.
- MRI scan: uses magnets to create an image of the tissues of the body.
- core needle biopsy: a small sample of bone taken with a needle.
- PET-CT scan: combines a CT scan with a positron emission tomography (PET) scan. A small amount of radioactive material is injected into a vein before the scan. It can help show where the cancer is in the body and whether it has spread.
Any tests and investigations that your child needs will be explained to you. We have more information about the different types of scans and tests your child may have.
Treating Ewing sarcoma
Most children with Ewing sarcoma have a combination of chemotherapy, surgery, and radiotherapy. Together, you and your child’s team will decide on the best treatment plan for them.
Chemotherapy
Chemotherapy is a medicine that kills cancer cells. It is usually given direct into a vein.
Most children with Ewing sarcoma have chemotherapy before surgery to control the cancer and kill cancer cells throughout the body. The tumour may also shrink after chemotherapy.
Chemotherapy is usually given before and after surgery. After surgery, it helps reduce the risk of the cancer coming back.
Surgery in the arms or legs
If your child has Ewing sarcoma in one of their arms or legs, the surgeon will try to remove the tumour without removing their arm or leg. This is called limb-sparing surgery.
The surgeon removes the affected part of bone and may replace it with either:
- a metal implant (prosthesis)
- bone from another part of your child’s body, or from someone else (bone graft).
If your child is still growing, they may be offered a ‘growing’ prosthesis. This is a type of artificial bone that can be lengthened as your child grows. Not all children will need this. It depends on their age and how much they are still growing. Some growing prostheses can be lengthened during an outpatient appointment. Others may need a short stay in hospital.
In rare cases, the surgeon may recommend removing their arm or leg (amputation). This is to make sure all the cancer has been removed. It may also be done if the surgeon thinks that limb sparing surgery may cause problems with how the limb works or moves.
Your child’s team will explain why they are recommending this and talk through all the options with you. They will give you time to ask questions and think about what this means for your child.
Surgery in the pelvis
If your child has Ewing sarcoma in their pelvis, their specialist team will plan treatment for the area where the cancer is. They may use radiotherapy, surgery, or a combination of both.
If they have surgery, the surgeon will remove the cancer from the bone. They will also remove a small area of healthy tissue around it. This helps reduce the risk of the cancer coming back. This is called taking a margin.
After surgery, the pelvis may be rebuilt. This is called reconstruction. The surgeon may use bone from another part of the body. This is called a bone graft.
Radiotherapy
Radiotherapy uses high-energy X-ray radiation beams to kill cancer cells.
Ewing sarcoma can respond well to radiotherapy.
Your child may have radiotherapy:
- before surgery
- after surgery
- instead of surgery, if surgery is not possible
- to treat cancer that has spread to other parts of the body.
Your child may be offered proton beam therapy (PBT). This is a specialist type of radiotherapy available in certain centres. Your child’s team will tell you if PBT is suitable for them. We have more information about PBT.
Where your child may be treated
Your child may be treated at more than one hospital. Different hospitals may specialise in different parts of treatment, such as chemotherapy or surgery.
These hospitals work closely together. They share information and plan your child’s care together.
Your child’s treatment will usually be led by a Principal Treatment Centre (PTC) for children. PTCs are hospitals that specialise in treating cancer in children and young people. They have expert teams who coordinate diagnosis, treatment, and care.
We have more information about treating sarcoma in children and young people.
After treatment
After your child’s treatment for Ewing sarcoma is finished, they will have follow-up appointments for several years. This is where their doctor can look for signs of sarcoma coming back. You will also have the chance to discuss any symptoms your child may be experiencing, and to talk about any worries you have.
During follow-up, your child will have:
- examinations to look for any signs of sarcoma returning
- imaging scans such as a CT or MRI
- chest X-rays to check whether the cancer has spread to the lungs.
Recurrence
Ewing sarcoma can sometimes come back in the same area after the treatment of a previous tumour. This is called a local recurrence. Sometimes sarcoma can spread to other parts of the body. This is called metastasis or secondary cancer.
If the cancer does come back, your child may be offered more treatment, such as chemotherapy, surgery, and radiotherapy. Their specialist team will recommend treatment based on their individual situation.
It is useful to check for recurrences on your child through examination. Your child’s doctor or sarcoma clinical nurse specialist can tell you what to look for.
It’s normal to feel worried that your child’s sarcoma might come back after treatment. Many people feel this way. If you’re feeling anxious, speak to your child’s healthcare team. They can reassure you, answer your questions, and help you find support.
We have more information about if sarcoma comes back.
Living with a child with Ewing sarcoma
Living with a child with Ewing sarcoma can be hard. We have support for parents of children with sarcoma, and we also have information about financial support. Whatever you’re worried about, we’re here to support you.
If you have any more questions about Ewing sarcoma, or if you need to talk to someone, our Support Line team are here for you.
More support
Call the Sarcoma UK Support Line
The Sarcoma UK Support Line is here for every person affected by sarcoma. Contact us for friendly, expert, confidential and free advice, information and support on anything to do with sarcoma.
Support groups
There are a number of sarcoma support groups across the UK. We have more information about support groups available online and in your local area.
Other organisations
- Bone Cancer Research Trust: The BCRT offers support for people with primary bone cancer. They have health information and support available.
- Maggie’s: Maggie’s is a charity that offers advice and support for adults and young people living with cancer.
- The Children and Young People’s Cancer Association (CCLG): CCLG has information for children and young people with cancer.
- Children with Cancer UK: Have support and information for parents, including support for coping with cancer.
- Young Lives vs Cancer: Young Lives vs Cancer provides clinical, practical and emotional support for children, teenagers, and young people with cancer. They have a Live Chat, phone, or email support service.
Was this information useful?
Quality assurance
We are a PIF TICK certified charity, which means our health information is produced to the highest possible standards.
Last reviewed July 2026 | Next review due July 2029
All references are available upon request. Please email info@sarcoma.org.uk
