Understanding Ewing Sarcoma
Find out what causes Ewing Sarcoma, how it's diagnosed, what symptoms to look for, and the treatments available for children and young people.
What You Need to Know:
The exact cause of Ewing Sarcoma is not fully understood. Unlike many other cancers, it is not linked to lifestyle or environmental factors, and nothing a parent did or didn't do causes it.
The Genetic Connection
Most cases of Ewing Sarcoma are associated with a specific genetic change known as a chromosomal translocation. In this change, small parts of two chromosomes — usuallychromosome 11 and chromosome 22 — switch places. This creates an abnormal gene, often called EWS-FLI1, which can lead to the development of cancer cells.
Important: This genetic change...
- Is not inherited from a parent
- Happens after birth, in a single cell by chance
- Cannot be passed on to siblings or future generations
Who It Affects
Ewing Sarcoma is most commonly diagnosed in teenagers and young adults, and it is slightly more common in males. It is rare in children of African or Asian ancestry, though it can occur in any ethnic group.
Early Recognition is Important:
The symptoms of Ewing Sarcoma can vary depending on the size and location of the tumour. In its early stages, it can be mistaken for a sports injury or growing pains, which may delay diagnosis.
Primary Symptoms
The most common symptom is pain in the affected bone, which often becomes worse at night or during physical activity. Other signs may include swelling, a noticeable lump, or even a fracture if the bone has been weakened.
General Symptoms
In some cases, more general symptoms may appear, including:
- Fatigue: feeling unusually tired or low in energy
- Fever: unexplained fevers that come and go
- Weight loss: losing weight without trying
When Nerves Are Affected
If the tumour is pressing on nearby nerves or the spinal cord, a child might also experience:
- Numbness or tingling
- Muscle weakness
- Difficulty walking (depending on the location)
Common Symptoms at a Glance
- Pain - ongoing pain in a bone or joint, often worse at night or with activity
- Swelling - a lump or swelling near the painful area
- Fractures - bones may break more easily, even with a minor injury
- Fatigue - persistent tiredness
- Fever - recurring fever with no clear cause
- Weight loss - losing weight without dieting
When to See a Doctor
You should contact a GP or paediatrician if your child has:
- Persistent or worsening bone pain
- Swelling or a lump that doesn't go away
- Pain that's worse at night or keeps coming back
While these symptoms don't always mean cancer, it's important to get them checked — especially if they continue or don't improve with usual treatment.
Understanding the Process:
Diagnosing Ewing Sarcoma involves several steps to confirm the presence of the cancer and to understand how far it has spread (this is called staging). The process usually begins after a child presents with symptoms like persistent bone pain or swelling that doesn't go away.
Diagnostic Tests
Doctors use a combination of tests to look at the affected area in detail and to check other parts of the body.
Typical Steps in Diagnosis:
- Physical examination - A doctor will check for swelling, tenderness, or a lump, and ask about your child's symptoms and medical history.
- Imaging tests - These include:
- • X-rays – usually the first test to look at the bone
- • MRI scan – to get detailed images of the tumour and surrounding tissues
- • CT scan – often used to check for spread to the lungs or other areas
- • PET scan or bone scan – to check whether the cancer has spread to other bones or parts of the body
- Biopsy - A small sample of the tumour is taken and examined under a microscope to confirm the diagnosis. This is usually done under general anaesthetic and may require a short hospital stay.
- Molecular and genetic testing - The biopsy sample is tested for the specific chromosomal change (usually involving chromosomes 11 and 22) that helps confirm it's Ewing Sarcoma. This is often referred to as a translocation.
- Bone marrow tests - A bone marrow aspiration and biopsy may be done to see if the cancer has spread to the bone marrow. This is more common in advanced cases.
Understanding Staging
Staging helps doctors understand the extent of the cancer and plan the most appropriate treatment.
Staging helps doctors understand:
- The size of the tumour
- Whether it has spread to nearby tissues
- If it has metastasised (spread) to other parts of the body, such as the lungs or bone marrow
Understanding the stage of the disease is crucial for planning the right treatment approach and giving families the most accurate information about what to expect.
Comprehensive Treatment Approach:
Treatment for Ewing Sarcoma usually involves a combination of therapies, tailored to the individual child. This is called a multidisciplinary approach, and it typically includes chemotherapy, surgery, and sometimes radiotherapy. The goal is to remove or destroy the cancer, while also preserving as much normal function as possible.
Planning Your Child's Treatment
The exact treatment plan depends on several important factors that help doctors create the most effective approach for your child.
The exact treatment plan depends on:
- The size and location of the tumour
- Whether the cancer has spread (metastasised)
- Your child's age and overall health
- How the tumour responds to the initial treatment
Care is provided by a specialist sarcoma team, often involving paediatric oncologists, surgeons, radiologists, and other healthcare professionals.
Standard Treatments
- Chemotherapy – Strong cancer-fighting medicines are given to shrink the tumour, kill cancer cells, and reduce the risk of it coming back. Chemotherapy is usually given before and after surgery or radiotherapy, and often forms the backbone of treatment.
- Surgery – Surgery aims to remove the tumour completely while preserving as much movement and function as possible. In some cases, reconstructive surgery may be needed afterwards.
- Radiotherapy – High-energy X-rays are used to kill cancer cells. This may be used before surgery to shrink the tumour, after surgery to kill remaining cells, or as the main treatment if surgery isn't possible.
- Supportive care – Alongside cancer treatment, your child may need:
- • Pain management
- • Physiotherapy
- • Nutritional advice
- • Psychological support
- • Educational support to help with missed school
New and Emerging Treatments
Researchers are continually working to find better and safer ways to treat Ewing Sarcoma.
These include:
- Targeted therapies – These are newer medicines designed to block specific genetic features of the cancer, such as the EWS-FLI1 gene fusion.
- Immunotherapy – Treatments that help the body's immune system recognise and fight cancer cells are being explored in clinical trials.
- Clinical trials – Some children may be offered a chance to join a research study (clinical trial) testing promising new treatments or combinations. These are carefully monitored and often offered through specialist centres.
Hope for the Future:
Research into Ewing Sarcoma treatments continues to advance. New targeted therapies, immunotherapies, and combination approaches are being studied to improve outcomes and reduce side effects.
Call 999 Immediately If:
Your child has any of these life-threatening symptoms:
- Difficulty breathing or severe shortness of breath
- Chest pain or pressure
- Severe bleeding that won't stop
- Loss of consciousness or severe confusion
- Seizures or convulsions
- High fever (above 38°C/100.4°F) with severe illness signs
Seek Urgent Medical Attention
Contact your child's medical team or visit A&E if your child has:
- Persistent fever (above 38°C/100.4°F) - do not give fever-reducing medications like Calpol or paracetamol as these can mask the temperature and hide important symptoms
- Signs of infection (redness, swelling, unusual discharge)
- Severe pain that isn't controlled by prescribed medication
- Persistent vomiting or inability to keep fluids down
- Sudden worsening of any symptoms
- New neurological symptoms (weakness, numbness, vision changes)
Important Contact Numbers
Emergency Services
999
For life-threatening emergencies
NHS 111
111
For urgent medical advice
Your Child's Medical Team:
Always keep these numbers easily accessible:
- • Local Hospital Oncology ward direct line
- • Consultant's secretary
- • Clinical nurse specialist
- • After-hours emergency contact
These numbers should be provided by your hospital team during your first appointment.
Trust Your Instincts
As a parent, you know your child best. If something doesn't feel right or you're worried about any changes in your child's condition, don't hesitate to seek medical advice. Healthcare professionals would rather check something that turns out to be fine than miss something important.
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