Symptoms and what to look for

Common symptoms of Ewing’s sarcoma

The earliest and most common symptom of Ewing’s sarcoma is pain at the tumour site. Patients often describe a “dull” and “aching” pain. Although patients (and their GPs) sometimes believe the pain relates to an injury, perhaps caused by an accident or playing sport, it is important to be aware that the pain caused by Ewing sarcoma is different to that which may be expected of an injury.

The pain:

  • may be mild to start with and may be intermittent (comes and goes) or constant, but is persistent.
  • tends to become more frequent when the patient is at rest and may increase in intensity as the tumour progresses.
  • is usually worse at night and can make it difficult to sleep. Difficulty in sleeping due to the pain is a key symptom of Ewing sarcoma as well as other types of bone cancer that is not common with other causes of pain, so it should be urgently investigated by a GP.
  • back pain can be deceptive and is associated with a wide range of conditions. A good history and physical examination, along with a low threshold for spinal  X-rays will help narrow the diagnosis.
  • pain associated with new mobility issues- unexplained loss of full joint movement, joint stiffness and reduced flexibility.
  • pain associated with inflammation and swelling over a bone or joint that can be seen or felt as a palpable lump that is growing in size.
  • a broken bone (pathological fracture) can occur from minimal trauma, when tumour has weakened the bone.

Another common symptom is a noticeable swelling around the tumour site. Sometimes the swelling can be large and mistaken for other causes such as a blood clot. However, where the tumour is “deep seated”, such as tumours in the pelvis or spine, the tumour may not be noticeable at all.

If the tumour puts pressure on a nerve (compression), patients can experience nerve pain, numbness, tingling or weakness of the muscles supplied by that nerve. An example of this is “sciatica” caused by tumours in the spine or pelvis that compress the sciatic nerve and cause burning type pain that spreads to the buttocks or down into the legs.

When Ewing sarcoma affects the spine, it is possible to present with symptoms of “spinal cord compression”. Spinal cord compression is a medical emergency and any patients with these symptoms and signs should present to the emergency department.

These symptoms can include:

  • Pain in the neck, back or lower back and possibly a noticeable swelling.
  • “Pins and needles” or numbness and tingling of arms or legs.
  • Incontinence, difficulty passing urine or constipation (i.e., going to the toilet).
  • Weakness of muscles in the arms or legs.
  • Difficulty with coordination.

Less common symptoms may include fever (temperatures or feeling hot and cold), tiredness, loss of appetite and weight loss. Symptoms due to spread of the cancer can also occur, such as breathlessness and coughing caused by the spread of the cancer to the lungs.

Importance of recognising symptoms

Early diagnosis is key to surviving Ewing’s sarcoma, but it can take many patients a long time to reach a correct diagnosis. Late diagnosis is problematic because it gives the cancer time to grow and spread.

Many symptoms of Ewing sarcoma are general and the symptoms mimic more common conditions that occur in children and adolescents such as growing pains, sporting injuries, injuries picked up at school or accidents around the house. Therefore, it is not uncommon for misdiagnoses to occur, especially in seemingly young healthy people that can lead to a late diagnosis of Ewing sarcoma.

Pain that comes and goes can lead patients to believe the injury or problem has disappeared. Only when the pain returns (sometimes weeks later) do patients go back to see their GP. Patients may not feel unwell until the cancer is in the advanced stages. Patients can be told their symptoms are due to growing pains. It is very important to note that growing pains, especially in the legs, affect both limbs at the same time whereas pain caused by Ewing sarcoma is localised to the tumour site, meaning only one side/leg will be affected.

Primary bone cancers are very rare and not every GP will come across a patient with bone cancer during their career. It is not uncommon for patients to have to return several times to their GP for recurring symptoms. Charities and sarcoma specialists have promoted awareness of the symptoms of Ewing sarcoma to as many medical practitioners as possible through training and awareness campaigns.