Image - Adam Dealey Image - The Adam Dealey Foundation for Ewing Sarcoma
Working in partnership with www.bonecancerresearch.org.uk (Registered Charity No. 1113276)

Ewing Sarcoma Diagnosis, Treatment
& Your Role as a Parent

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Follow the bullet point links below to the relevant subjects, these all link within this one page. There are also links to other websites that you may find may helpful.

Diagnosis

What is staging?

Staging is the process of determining the location and amount of the disease at the time of diagnosis. Staging for a Ewing's tumour is based on the size and location of the tumour and on whether it has spread (metastasized). A tumour is staged either as localized or metastatic; a localized tumour is one that has not spread to another part of the body, and a metastatic tumour is one that has spread. The method of treatment proposed for your child will depend upon the stage of the disease at the time of diagnosis.

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What tests and procedures will my child need?

To diagnose Ewing's tumour and to determine the extent of your child's disease, a number of tests and procedures are necessary. They will include a complete history of the illness, including the location, duration, and intensity of pain; assessment of any limp or limited range of motion; physical examination to find skin that is warm to the touch or tender, which may indicate the presence of a soft tissue mass; blood studies; and the radiography imaging studies described below.

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MRI

MRI (magnetic resonance imaging) is a test that gives pictures of organs and tumours inside the body. The MRI scan can reveal soft tissue, nerve, and blood vessel involvement. It can determine whether and how a tumour has spread. The child is asked to lie on a table that moves into a tube like machine that surrounds the child with a magnetic field. The test is painless, but the machine makes a loud noise that may be scary for the child. If your child is not able to lie completely still for this test, he or she may be given medicine (a sedative) to make him or her sleep during the test.

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CT or CAT scan

The CT or CAT (computerized axial tomography) scan is a computer-assisted X ray that shows pictures of internal organs and tumours. It is painless. The child must be able to lie absolutely still during the scan. Some children require sedation to help them lie still. It may be necessary for the child to drink a flavourless dye that makes the pictures clearer. Sometimes a small amount of dye is injected into a vein. Generally there are no side effects from either type of dye, although allergic reactions are possible.

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Bone scan

A bone scan may be done to determine whether there has been metastasis (spreading) of the tumour to any of the bones. It involves injecting a small amount of isotope (radioactive marker) into a vein, allowing 2-3 hours for the isotope to distribute itself throughout the body, and then having the child lie still for scans (pictures) to be taken of the entire body. The scanning process is painless, but some children need sedation to help them lie still.

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X-ray

A chest X-ray is used to determine whether the tumour has spread. A complete skeletal X-ray may be necessary to confirm the findings of the scans. Efforts will be made to minimize your child's exposure to X-rays.

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Blood tests

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Blood tests are done to monitor the child's blood cells, body salts, and chemistries. A complete blood cell count (CBC) is useful in detecting a drop in the number of red blood cells (oxygen carriers), white blood cells (infection fighters), or platelets (cells that help blood clot properly). Blood chemistries such as BUN and creatinine monitor changes in kidney function. Chemistries like SGPT, SGOT, and bilirubin detect changes in liver function. These tests are usually all taken at the time of diagnosis to rule out other diseases, and they are also used throughout therapy to monitor the child's response to treatment.

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Bone marrow aspiration and biopsy

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This test is necessary to determine whether there are tumour cells in the bone marrow (the blood-producing factory of the body). It involves inserting a special needle into one of the bones (usually the back part of the hipbone) and drawing some bone marrow into a syringe. It is usually necessary to obtain bone marrow samples from both hipbones. Another part of this test involves taking a small piece of the hipbone to examine for tumour cells (biopsy). This is the only way to positively determine whether there are tumour cells in the bone marrow. This test is important to determine the stage of the disease and to choose the proper treatment. Medication can be used to help the child remain still and to minimize any discomfort.

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Tumour biopsy

This test is necessary to make a diagnosis and to determine what treatment should be chosen. The biopsy is usually done through an incision made by a surgeon in the operating room while the child is under sedation or anaesthesia. Some medical centres do the biopsy in the radiology department, where the biopsy sample is obtained through a needle guided into the tumour. Your child's comfort and anxiety level will always be considered in planning procedures that involve needles.

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Venous access device (VAD)

A VAD is a permanent intravenous (IV) tube that allows medicine to be given and blood to be removed without painful needle sticks. It can be used for blood tests, medications, chemotherapy, blood products, and nutritional support, when needed. It is inserted by a surgeon while the child is under anaesthesia. You and your child's doctor will decide whether your child needs a VAD.

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How can Ewing's tumours be treated?

Three types of therapy are commonly used to treat Ewing's tumours: surgery, chemotherapy, and radiation. The type of therapy chosen depends upon the age of your child and the extent of the disease. In some cases the only treatment needed is surgery. If the tumour has spread, chemotherapy and radiation are also given. Your child's doctor will talk with you about the best treatment for your child, and you and the doctor will make the decisions about your child's treatment.

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Surgery

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It is sometimes possible to remove the entire tumour by surgery at the time of diagnosis. If the tumour is large or has spread, radiation treatments or chemotherapy or both may be given first to shrink the tumour. This is done to minimize the risk of surgical injury to the normal tissues surrounding the tumour.

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Radiation

Radiation therapy is a very precise kind of X-ray treatment. It is given in specially measured amounts by radiation therapy experts. If radiation is necessary for your child, the radiation therapy doctor will discuss with you exactly how the radiation will be given and how long the treatments will last. In general, children experience very few side effects while they are getting radiation therapy. Some children become more tired than usual or have decreased appetites. Other possible side effects will be discussed with you and your child in detail.

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Chemotherapy

Chemotherapy involves giving medicines that will help kill the cancer cells, shrink the tumour, and prevent the tumour from spreading to new places. Several chemotherapy medications are known to be effective in killing the cells that cause Ewing's tumours, but no single chemotherapy medicine can control this disease by itself. As a result, chemotherapy medications are usually given in combinations. A treatment usually lasts several days and often is given in the hospital. Your child may receive some chemotherapy medications that can be given in a clinic or at home. Your child's doctor will discuss with you the types of medication and how they are given. Most medications are given through a vein or a VAD. Your child's doctor will also explain the possible side effects of the specific chemotherapy treatment recommended for your child.

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How long will my child's therapy last?

Intensive treatment for Ewing's tumour lasts approximately 1 year. Regular routine follow-up and maintenance will continue for another 2 years. Your child will be followed every 6 months for the next 5 years and then once a year for life. The purpose of the later follow-up appointments is to monitor for possible late side effects from treatment and for recurrence.

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What new methods of therapy are there?

Most of the advances in the treatment of childhood cancer have been made through a process known as clinical trials. In clinical trials, the best known (standard) treatment for a particular cancer is compared with a new (experimental) treatment that is believed to be at least as good as, and possibly better than, the standard treatment. Clinical trials allow doctors to determine whether promising new treatments are safe and effective.

Participation in clinical trials is voluntary. Because clinical trials involve research into new treatment plans, all risks cannot be known ahead of time, and unknown side effects may occur. On the other hand, children who participate in clinical trials can be among the first to benefit from new treatment approaches. Before making a decision about your child's participation in a clinical trial, you should discuss the risks as well as the potential benefits with your child's doctor and treatment team.

For Ewing's tumours, the experimental protocols include total body irradiation in addition to chemotherapy, followed by autologous bone marrow rescue. Bone marrow rescue involves temporarily removing some of the child's healthy blood cells through a VAD and freezing them. The child is given very high doses of chemotherapy drugs, and in some cases radiation therapy, to overwhelm and destroy the Ewing's tumour. Because the body's bone marrow has been weakened by the treatment, the child is then given back his or her own stored blood cells.

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How can I work with my child's healthcare team?

Your child's care requires a team approach. As a parent, you are a major part of the team-your input is important. Because you know your child better than anyone else, the medical staff will need your help to deliver comprehensive management for the disease.

It is important to communicate openly with your child's healthcare team. Be sure to question your child's doctor or nurse whenever there is anything you are not sure about. It helps to write down your questions when you think of them.

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Here are some examples of questions to ask:

  • What kind of cancer does my child have?
  • Has the cancer spread beyond the primary site?
  • What is the stage of the cancer, and what does that mean?
  • What treatment choices are available?
  • What treatment do you recommend, and why?
  • What risks or side effects does the recommended treatment have?
  • What should we do to prepare for treatment?
  • What is my child's outlook for survival?
  • What are the chances of a recurrence?

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Are my feelings normal? What can I do about them?

Hearing that your child has cancer can be shocking and overwhelming. At first you may not believe it, or you may hope that the diagnosis is wrong. However, the changes you see in your child and the experience of being in the hospital and beginning treatment will no doubt confirm the reality of your child's situation.

Many family members feel that they are somehow responsible for their child's disease, or they feel guilty that they were not able to detect it sooner. Remember that this disease often does not become noticeable until it is quite advanced, so there may have been no way to detect it in the early stages.

In addition to shock and guilt, you and your family will probably feel anger and sadness. Even the youngest family members are likely to be affected. These feelings are normal, and each family member will express them in different ways and at different times. It can be very difficult to feel so many strong emotions at once. Talking honestly with one another about feelings, reactions, and questions will help everyone in the family.

It may seem difficult to talk to friends, family, or even medical staff, but venting your feelings can help you cope. Remember that your child will benefit if family members continue to show their caring through support and communication.

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How can I help my child?

As a parent, you will often notice changes in your child during the treatment. These changes or symptoms can make you feel even more helpless. It is essential to remember that, in spite of changes on the outside, your child is still the same person on the inside. Hair loss and other changes in body appearance are temporary. They often bother adults much more than the child or the child's siblings and friends. All of your feelings about what your child is going through during treatment must be balanced by remembering that treatment provides an opportunity to cure the disease and to have your child go on to a full and meaningful life.

It is important to reinforce to your child that nothing he or she did or said caused this disease. Telling your child that your angry or sad feelings are directed at the cancer and not at him or her will help keep your special relationship honest and close. Like you, your child will need someone with whom he or she can share feelings. Don't hesitate to ask your child to express his or her feelings, and don't be afraid to explain what is happening and why.

In spite of the disease, your child is still growing and learning. All children, sick and well, need love, attention, discipline, limits, and the opportunity to try new skills and activities. As you begin to learn the new, special needs of your child, it is important to remember that he or she still has all the needs and rights of any growing, developing person. Do not avoid using direct terms and explanations with your child. Children tolerate treatment better if they understand it and are allowed to be active decision makers whenever possible. The same is true for parents!

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Is my child's diet important during the treatment?

Yes. We know from research that well-nourished children tolerate therapy better and have fewer treatment delays due to illness. It may be difficult for your child to resume normal eating habits during therapy, so you will need to be flexible and creative. Often numerous small meals are tolerated better than three large ones. Children usually are more interested in eating foods that they help prepare. It is important to include your child in the social activity of family meals even if full meals aren't eaten. Remember, nobody wins food fights-it is best not to force your child to eat.

Make sure that foods high in protein and carbohydrates are readily available. Multivitamins, medicines, and herbs should be approved by your doctor before you give them to your child, because there may be interaction between them and chemotherapy. A dietitian trained in children's calorie and energy needs can offer you guidance. The medical staff can intervene if there is a nutritional problem.

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Can my child attend school during treatment?

Your child's ability to attend school will depend on the intensity of the therapy and on the response to treatment. Some children tolerate chemotherapy and radiation better than others. Your child may not be able to attend school for extended periods due to treatment or hospitalization. However, it is important that your child keep up with his or her schoolwork. Talk to your child's regular school about arranging services, including help from a home tutor, until he or she is able to return to school. You also should discuss school attendance with your child's doctor. Many paediatric hospitals have programs that enable children to attend school while hospitalized.

School is important because it helps children maintain social contact with their peers. Maintaining time with your child's friends will be an important part of recovery and will ease the adjustment when he or she returns to school. It is important for your child to return to school as soon as he or she is medically able to do so.

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Information Reference:

The information contained within this page was obtained from the Cancer Source Kids .com (a world of understanding):

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Established since 1995 The Adam Dealey Foundation for Ewing Sarcoma.
The Adam Dealey Foundation is a non-profit charity working in partnership with the Bone Cancer Research Trust to bring public awareness of Ewing Sarcoma and help people who are suffering from.

Site last updated: 22 July 2009

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