PDQ® Treatment Patients
PDQ is a computer system that provides up-to-date information on cancer and its prevention, detection, treatment, and supportive care. PDQ is a service of the National Cancer Institute (NCI) for people with cancer and their families and for doctors, nurses, and other health care professionals.
To ensure that it remains current, the information in PDQ is reviewed and updated each month by experts in the fields of cancer treatment, prevention, screening, and supportive care. PDQ also provides information about research on new treatments (clinical trials), doctors who treat cancer, and hospitals with cancer programs. The treatment information in this summary is based on information in the PDQ summary for health professionals on this cancer.
Cancer in children and adolescents is rare. The majority of children with cancer are treated at cancer centers with special facilities to treat childhood cancers. There are organized groups of doctors and other health care professionals who work together by doing clinical trials to improve treatments for children with cancer.
PDQ can be used to learn more about current treatment of different kinds of cancer. You may find it helpful to discuss this information with your child's doctor, who knows your child and has the facts about your child's disease. PDQ can also provide the names of additional health care professionals and hospitals that specialize in treating children who have cancer.
Before your child begins treatment, you may want to consider entering your child in a clinical trial. PDQ can be used to learn more about the trials. A clinical trial is a research study that attempts to improve current treatments or find new treatments for people with cancer. Clinical trials are based on past studies and information discovered in the laboratory. Each trial answers specific scientific questions in order to find new and better ways to help people with cancer. During clinical trials, information is collected about new treatments, their risks, and how well they do or do not work. When a clinical trial shows that a new treatment is better than the treatment currently used as "standard" treatment, the new treatment may become the "standard" treatment. Children who are treated in clinical trials have the advantage of getting the best available therapy. In the United States, about two thirds of children with cancer are treated in a clinical trial at some point in their illness.
Listings of current clinical trials are available on PDQ. In the United States, there are two major groups (called cooperative groups) that organize clinical trials for childhood cancers: the Childrens Cancer Group (CCG) and the Pediatric Oncology Group (POG). Doctors who belong to these groups or who take part in other clinical trials are listed in PDQ.
To learn more about cancer and how it is treated or to learn more about clinical trials for your child's kind of cancer, call the National Cancer Institute's Cancer Information Service. The number is 1-800-4-CANCER (1-800-422-6237); TTY at 1-800-332-8615. The call is free and a trained information specialist will be available to answer your cancer-related questions.
PDQ is updated whenever there is new information. Check with the Cancer Information Service to be sure that you have the most up-to-date information.
Childhood soft tissue sarcoma is a disease in which cancer (malignant) cells begin growing in soft tissue somewhere in the body. The soft tissues include muscles, tendons (bands of fiber that connect muscles to bones), fibrous tissues, fat, blood vessels, nerves, and synovial tissues (tissues around joints). Soft tissues connect, support, and surround other body parts and organs.
Soft tissue sarcomas are rare in infants and children. If a patient has symptoms of a soft tissue sarcoma, the doctor may order x-rays and other tests. The doctor may also cut out a small piece of tissue and have it looked at under the microscope to see if there are any cancer cells. This is called a biopsy.
There are many different kinds of soft tissue sarcoma, depending on the soft tissue where the cancer begins. Rhabdomyosarcoma is the most common type of childhood soft tissue sarcoma. It begins in muscles around the bone and can be found anywhere in the body. If you want information on rhabdomyosarcoma, refer to the PDQ patient information statement on childhood rhabdomyosarcoma. PDQ also contains a patient information statement on adult soft tissue sarcoma.
The following types of soft tissue sarcoma in children are covered in this statement:
Once childhood soft tissue sarcoma is found, more tests will be done to find out if the cancer cells have spread to other parts of the body. This is called staging. Your doctor needs to know the stage of the cancer to plan treatment.
There are several staging systems for childhood soft tissue sarcoma. There is not one that applies to all types of this cancer. The treatment options in this statement are based on whether the cancer has spread or the amount of tumor left after surgery.
Desmoid tumors are not cancer. Desmoid tumors may be confused with a type of fibrosarcoma.
The cancer is found only in the area where it started and has not spread to other parts of the body.
The cancer has spread from where it started to other parts of the body.
The cancer has come back (recurred) after it has been treated. It may come back in the area where it started or in another part of the body.
There are treatments for all patients with childhood soft tissue sarcoma. Three types of treatment are used, most often in combination with each other:
Radiation therapy uses high-energy x-rays to kill cancer cells and shrink tumors. Radiation may come from a machine outside the body (external radiation therapy) or from putting materials that produce radiation (radioisotopes) through thin plastic tubes in the area where the cancer cells are found (internal radiation therapy). Clinical trials are testing radiation given in several small doses per day (hyperfractionated radiation therapy).
Chemotherapy uses drugs to kill cancer cells. Chemotherapy may be taken by mouth in the form of a pill, or it may be put into the body by a needle in a vein or muscle. Chemotherapy is called a systemic treatment because the drugs enter the bloodstream, travel through the body, and can kill cancer cells throughout the body.
Treatment for soft tissue sarcoma depends on where the cancer is, how far it has spread, and what the cancer cells look like under the microscope.
The patient may receive treatment that is considered standard based on its effectiveness in a number of patients in past studies, or the doctor may recommend the patient enter a clinical trial. Not all patients are cured with standard therapy and some standard treatments may have more side effects than are desired. For these reasons, clinical trials are designed to test new treatments and to find better ways to treat cancer patients. A large cooperative group clinical trial comparing new treatments with standard treatments is going on in most parts of the country for all stages of soft tissue sarcoma. If you want more information, call the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237); TTY at 1-800-332-8615.
Treatment depends on the type of soft tissue sarcoma.
If your child has fibrosarcoma (older child or teenager), neurofibrosarcoma, liposarcoma, synovial sarcoma, hemangiopericytoma (older than 1 year of age), malignant fibrous histiocytoma, or leiomyosarcoma, treatment may be one of the following:
2. Surgery to remove the cancer followed by radiation therapy (if small amounts of tumor remain after surgery).
3. Surgery to remove the cancer followed by radiation therapy and chemotherapy (if larger amounts of tumor remain after surgery).
If your child is younger and has fibrosarcoma or is under 1 year old and has hemangiopericytoma, treatment may be one of the following:
2. Chemotherapy and radiation therapy if the tumor cannot be removed by surgery.
If your child has alveolar soft part sarcoma, treatment may be one of the following:
2. Surgery followed by radiation therapy (if the cancer is not completely removed during surgery).
3. Surgery followed by chemotherapy. This treatment is still being evaluated in clinical trials.
Desmoplastic round-cell tumors are abdominal tumors that spread rapidly and usually occur in males in their teens and twenties. Treatment will probably be surgery, radiation, and chemotherapy. Clinical trials are evaluating new combinations of chemotherapy.
Treatment for recurrent childhood soft tissue sarcoma depends on what treatment your child received before, the part of the body where the cancer has come back, and your child's general condition. You may wish to have your child take part in a clinical trial.
TO LEARN MORE..... CALL 1-800-4-CANCER
To learn more about childhood soft tissue sarcoma, call the National Cancer Institute's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237); TTY at 1-800-332-8615. By dialing this toll-free number, you can speak with someone who can answer your questions.
The Cancer Information Service can also send you booklets. The following booklets on childhood cancer may be helpful to you:
You can also write to the National Cancer Institute at this address: