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Although Ewing’s sarcoma can occur at any age, it is most usually found in adolescents and young adults whose bones are still growing and is less common after the age of 30. It can develop anywhere but is usually found in the pelvis, lower leg (tibia) and thigh bone (femur). In a very few cases, the sarcoma will start in the soft tissues that surround the bone or the joint, rather then the bone itself. This type of Ewing’s sarcoma is extraosseous which means ‘outside the bone’.
While the cause of this type of bone cancer is not known, it is thought to relate to the stress placed on bones during times of rapid growth.
The signs and symptoms of Ewing’s sarcoma will depend on the size of the cancer and where it is in the body. The main symptoms are:
- Bone pain in the affected area; in many patients this grows more severe over time and is especially bad at night
- Swelling and tenderness in the affected area
Other less common symptoms include:
- A feeling of exhaustion
- Weight loss
As tumours grow, they can also put pressure on the soft tissues around them, causing swelling and pain. Some Ewing's sarcomas cause no symptoms at all, but weaken the affected bone. This means it is at risk of fracturing.
These symptoms, however, can be caused by a wide range of conditions and many patients who experience them will not have Ewing’s sarcoma. Pain and swellings, for example, can be the result of sports injuries.
There are a series of tests and investigations which can be done to confirm or rule out a diagnosis of Ewing’s sarcoma, and to find out whether the cancer has spread to other parts of your body. The tests will also check your general health.
These will confirm the shape and position of the tumour.
You will be given an injection of a very small dose of radioactive substance (an isotope) which collects in the bones. Once the isotope has had time to reach the bones, a special gamma camera takes pictures of your bones. A bone scan will show up abnormal areas where more of the isotope has collected.
This is the removal of a piece of bone which will then be examined under a microscope. Biopsies are the only definite way to find out whether the lump is malignant or not. Most biopsies are performed with a needle. If the needle biopsy is inconclusive then your doctor may recommend a small operation called an open biopsy.
You may have other tests, which include a CT scan or MRI scan. This will give us more information about the tumour and whether it has spread.
The treatment for Ewing’s sarcoma may involve surgery, chemotherapy or radiotherapy. You may receive one or more of these treatments depending on where your sarcoma is, how big it is and your age and general health.
Surgery, to remove the tumour from the bone, is the most common treatment for Ewing’s sarcoma. Where possible, the surgeon will offer limb-sparing surgery. This means the surgeon removes the part of the bone where the cancer is growing and replaces it with either a prosthesis or a bone graft.
Sometimes, limb-sparing surgery may not be able to remove the entire tumour. The whole limb may then need to be removed (amputated). After amputation, most people can be fitted with an artificial limb (prosthesis), which helps with regaining independence and mobility, if a leg is affected.
Losing a limb is a distressing experience and you will be given the opportunity to discuss this and prepare for the surgery.
Your surgeon will discuss the different types of surgery with you, and you will be given the chance to ask any questions you may have. They will also be able to give you information on support groups and services that will be able to help your recovery and rehabilitation.
Talking about your feelings before and after surgery may help. You may wish to talk to a friend or relative about your feelings or you may prefer to talk to a counsellor.
Chemotherapy (treatment with anti-cancer drugs) is an important treatment for patients with Ewing’s sarcoma.
A course of chemotherapy is usually given before surgery (neo-adjuvant treatment) to make the tumour smaller and easier to remove. Another course will be given after surgery to kill off any cancer cells that might remain in the area where the sarcoma was.
Radiotherapy is often very effective in the treatment of Ewing’s sarcoma.
It is usually used as the main form of treatment when the position of tumour means surgery is not possible. It may be given before surgery to shrink the tumour or after surgery to kill off any cancer cells that might remain in the area where the sarcoma was. It can also be helpful for relieving pain caused by tumours.
If radiotherapy will form part of your treatment plan, the doctors and nurses treating you will explain and answer any questions you may have about the treatment, its benefits and side effects.
Having and being treated for Ewing’s sarcoma can cause fatigue. You will also need to have regular checkups after treatment is finished.
During your treatment you may start to feel tired and listless. This may be general fatigue or it may be that you become tired more easily after normal activities. This is quite normal and usually occurs with leukaemia and its treatments.
Do talk about how you are feeling with your consultant or clinical nurse specialist. They will be able to suggest ways of conserving your energy or may be able to treat the causes of your tiredness, such as not being able to sleep or anaemia.
If you are at home, try to plan your day so that light activities are spaced between more energetic activities. Do get enough rest and only do what you feel you can cope with. People will often be willing to lend their support.
If you get tired easily, limit your activities and conserve your energy for the things that mean the most to you. Ask your family and friends to help with household chores.
After your treatment is finished you will continue to be monitored with regular checkups, scans and blood tests. If you notice new symptoms or have any concerns about your health between appointments, please contact your hospital.