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Ewing Sarcoma



Follow up

The treatment of Ewing sarcoma (ES) is often associated with significant long term health risks. Long-term follow-up is essential for these patients and examples of appropriate follow up are given below.

Long-term follow-up after treatment for ES:

After treatment for ES there are many chronic health problems to be aware of and to screen for in long-term survivors of this disease:

Example of annual follow up:

Investigation Important aspects to screen for:


  • Level of energy, general health
  • Depression
  • Social/employment situation
  • Exercise
  • Smoking, recreational drugs and alcohol ingestion


Chemotherapy related:

  • Symptoms of cardiac dysfunction related to Adriamycin induced cardiomyopathy (e.g. shortness of breath on exertion, palpitations and orthopnoea)
  • Problems with fertility related to alkylating agent exposure
  • Symptoms of peripheral neuropathy related to Vincristine exposure
  • Back pain, history of fractures - after intensive chemotherapy patients are more at risk for osteoporosis


Head and neck ES:


Thoracic ES (rib and T spine) :

  • Respiratory symptoms such as shortness of breath, cough and chest pain


Abdominal and pelvic ES:

  • Abdominal pain and cramping
  • Diarrhoea/constipation
  • Change in bowel habit
  • Rectal bleeding
  • Bladder symptoms (dysuria, hematuria, frequency and any bladder infections)
  • Problems with fertility - unable to conceive
  • Women: menstrual cycle, menopausal symptoms, sexual function
  • Men: sexual function


Limb ES:

  • Limb pain, swelling, joint pain and dysfunction
  • Recurrent episodes of cellulitis




  • Blood pressure
  • Weight and height (BMI)
  • General examination
  • Check skin in previous RT field for skin cancers (e.g. basal cell carcinoma and rarely melanoma)


Head and neck ES:

  • Examine neck to exclude thyroid nodules
  • Visual acuity, visual fields and fundoscopy
  • Check hearing
  • Dental decay, trismus, oral ulcers


Thoracic ES:

  • Check for scoliosis and chest wall deformity
  • In long-term female survivors check for abormal breast masses


Abdominal and pelvic ES:

  • Check for scoliosis as spinal growth may have been affected by RT
  • Abdominal and pelvic examination


Limb ES:

  • Check limb length and joint function
  • Lymphedema may be present


Blood work


  • Routine blood work including blood count, electrolytes, BUN, serum LDH and creatinine and liver function tests
  • Hepatitis C testing if blood product transfusion before 1994


Head and neck ES:

  • Assessment of pituitary function should be repeated every year or so and supervised by an endocrinologist (eg. ACTH deficiency may develop many years after therapy)
  • Thyroid function tests (at least free T4 and TSH)
  • Testing for metabolic syndrome: Fasting blood glucose & lipids


Radiology screening

General ES: These investigations are done more frequently immediately after the end of therapy and then subsequently the timing is controversial:

  • CT of chest to exclude pulmonary relapse
  • Bone scan


Head and neck ES:

  • MR of the head at least every 3 years or so (starting 10 years after the end of therapy) to exclude RT induced meningioma
  • Ultrasound scan of the thyroid every 3 years (starting 10 years after the end of therapy) to exclude papillary carcinoma of the thyroid


Thoracic ES:

  • CT of chest
  • Pulmonary function tests if indicated
  • Early screening for breast cancer in female survivors of thoracic ES who have been given chest RT


Abdominal and pelvic ES:

  • Ultrasound of the abdomen and pelvis every year or so may be helpful to exclude new masses and to ensure that there is no hydronephrosis


Extremity ES:

  • Intermittent MR scan of previous disease site (frequency every year or so after end of therapy - then subsequent follow up controversial)


Special investigations


  • Any adriamycin exposure - echocardiogram every 2-3 years or so


Head and neck ES:

  • Neurocognitive testing may be important if there are memory problems to formally document cognitive impairment ( to obtain vocational or recreational rehab or to apply for a disability pension)
  • Audiology testing every one to two years to assess for hearing loss after head and neck RT


Abdominal and pelvic ES





  • Most patients need to have other specialist physicians involved in their follow up with assessment every 1 - 2 years
  • Anyone who has had intensive chemotherapy is at risk for early onset osteoporosis and should be seen in consultation by a specialist with expertise in this area.


Head and neck ES usually requires follow up with:

  • Endocrinology
  • Ophthalmology or neuro-ophthalmology
  • Oral oncology
  • Plastic surgery (if patient was very young at the time of therapy, significant hypoplasia may be present and this usually requires a multidisciplinary team for reconstruction - plastic surgery, oral surgery and dentistry.  Hyperbaric oxygen is often necessary prior to reconstructive surgery to enable wound healing)


Thoracic ES:

  • May need follow up with a respirologist


Abdominal and pelvic ES:

  • Gastroenterologist for chronic diarrhoea and malabsorption
  • Fertility specialist
  • Endocrinologist for hypogonadism
  • Immunologist may be important if there is splenic dysfunction


Supportive care
  • Family counselling
  • Psychology
  • Psychiatry



General: The patient should seek immediate medical help if a new swelling (painless or painful) appears within the previous RT field as this may be due to a second malignant neoplasm.



  • Advise about diet, exercise and lifestyle choices (such as smoking) which may further increase the risk of vascular disease.
  • Diet rich in Vitamin D, calcium and dairy servings to reduce risk of osteoporosis. 
  • Regular exercise is very important. Almost all ES patients will have been exposed to adriamycin and to be at risk for cardiomyopathy. Cardiac fitness is very important.
  • Avoid sunburn, use sunscreen and wear a hat in bright sunlight. Skin in previous RT more likely to be damaged by sun exposure         


Head and neck ES:

  • Meticulous dental care with regular cleaning and the use of fluoride.
  • Skin previously in the RT field should be protected from the sun (more vulnerable to damage).
  • Patients with pituitary dysfunction and ACTH Deficiency, during infection, surgery and illness survivors of head and neck RMS may need support with extra steroid medication.
  • Medic Alert bracelets are advised to warn about ACTH deficiency.


Thoracic ES treated with RT:

  • Early screening for breast cancer


Abdominal and pelvic ES:

  • Early screening for colon cancer if any abdominal RT of 30 Gy or higher to the abdomen, pelvis, or spine.  Colonoscopy should be performed beginning at age 35 years or 10 years following RT (whichever occurs last).


Limb ES: (After RT)

  • Avoid sports where there is a risk of injuring the limb or protect the limb with padding during contact sports as wound healing is usually delayed in a previous RT field.
  • Avoid sun burn to skin previously given RT as there is likely to be increased sensitivity.
  • For lymphedema, a pressure stocking may help to reduce ankle swelling at the end of the day.
  • Severe lymphedema may benefit from the use of a "lympha Press" or a similar type of mechanism.
  • Lymphedema is associated with an increased risk of cellulitis (bacterial infection of the subcutaneous tissues).  Redness, pain and signs of infection are likely to require prompt Rx with antibiotics.


Patient information

(COG) Survivorship Guidelines



Head and neck ES patients:


Thoracic ES:


Abdominal and pelvic ES:


Limb ES:






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