KidsMD Health Topics

Our Health Topics

Soft Tissue Sarcomas

  • Soft tissue sarcomas are cancerous tumors that begin in the tissues that connect, support or surround organs and other body structures.

    • A soft tissue sarcoma can develop almost anywhere in the body.
    • The cause is unknown, but has been linked to genetics.
    • It’s rare, accounting for less than 1 percent of all new cancer cases each year and 3 percent of all childhood tumors.
    • Treatment may involve surgery, radiation and/or chemotherapy.
    • It may exist for a long time before being discovered.

    How we approach soft tissue sarcomas

    Dana-Farber/Boston Children’s Cancer and Blood Disorders Center provides comprehensive medical and surgical care for children and adolescents with soft tissue tumors.

    We understand that you may have a lot of questions when your child is diagnosed with acute a soft tissue sarcoma.

    • Is it dangerous?
    • Does my child need to be hospitalized?
    • How will it affect my child long term?
    • What do we do next?

    We’ve tried to provide some answers to those questions in the following pages, and our experts can explain your child’s condition fully. If you have further questions during your hospital stay, we have a resource room that will help answer your questions.

    Our multidisciplinary approach to care ensures in-depth discussion of each case and personalized treatment plans for every patient. We integrate expertise from the following specialists:

    • pediatric oncologists, surgical oncologists and radiation oncologists
    • pediatric experts from every medical subspecialty 
    • highly skilled and experienced pediatric oncology nurses
    • Child Life specialists, psychologists, social workers and resource specialists who provide supportive care for your child before, during and after treatment

    In addition, our cancer center offers the following services:

    • Expert diagnosis by pathologists using advanced molecular diagnostic testing to identify your child’s type of tumor. Knowing the molecular composition of a tumor helps predict which treatments are more likely to work.
    • Access to unique Phase I clinical trials, from our own investigators, and from the Children’s Oncology Group.
    • Expert surgical care from experienced pediatric surgeons, several of whom developed approaches used at centers across the country.
    • Support services to address all of your child and family’s needs.
    • A weekly survivorship clinic, which set the national standard for childhood cancer survivorship care. This weekly clinic offers ongoing care to manage late effects caused by your child’s cancer or the treatment they received.

    Pediatric soft tissue sarcomas are cancerous tumors that begin in the tissues that connect, support or surround organs and other body structures.

     

    • A soft tissue sarcoma can develop almost anywhere in the body.
    • The cause is unknown, but has been linked to genetics.
    • It’s rare, accounting for less than 1 percent of all new cancer cases each year and 3 percent of all childhood tumors.
    • Treatment may involve surgery, radiation and/or chemotherapy.
    • It may exist for a long time before being discovered.

    How we approach soft tissue sarcomas in children

    Dana-Farber/Boston Children’s Cancer and Blood Disorders Center provides comprehensive medical and surgical care for children and adolescents with soft tissue tumors.

    We understand that you may have a lot of questions when your child is diagnosed with an acute soft tissue sarcoma.

    • Is it dangerous?
    • Does my child need to be hospitalized?
    • How will it affect my child long term?
    • What do we do next?

    We’ve tried to provide some answers to those questions about pediatric sarcoma in the following pages, and our experts can explain your child’s condition fully. If you have further questions during your hospital stay, we have a resource room that will help answer your questions.

    Our multidisciplinary approach to care ensures in-depth discussion of each case and personalized treatment plans for every patient. We integrate expertise from the following pediatric sarcoma specialists:

    • pediatric oncologists, pediatric hemagologists, surgical oncologists and radiation oncologists
    • pediatric experts from every medical subspecialty
    • highly skilled and experienced pediatric oncology nurses
    • Child Life specialists, psychologists, social workers and resource specialists who provide supportive care for your child before, during and after treatment

    In addition, our cancer center offers the following services:

    • Expert diagnosis by pathologists using advanced molecular diagnostic testing to identify your child’s type of tumor. Knowing the molecular composition of a tumor helps predict which treatments are more likely to work.
    • Access to unique Phase I clinical trials, from our own childhood cancer research investigators, and from the Children’s Oncology Group.
    • Expert surgical care from experienced pediatric surgeons, several of whom developed approaches used at centers across the country.
    • Support services to address all of your child and family’s needs.
    • A weekly survivorship clinic, which set the national standard for childhood cancer survivorship care. This weekly clinic offers ongoing care to manage late effects caused by your child’s cancer or the treatment they received.

    Pediatric soft tissue sarcomas are cancerous tumors that begin in the tissues that connect, support or surround organs and other body structures.

    • A soft tissue sarcoma can develop almost anywhere in the body.
    • The cause is unknown, but has been linked to genetics.
    • It’s rare, accounting for less than 1 percent of all new cancer cases each year and 3 percent of all childhood tumors.
    • Treatment may involve surgery, radiation and/or chemotherapy.
    • It may exist for a long time before being discovered.

    How we approach soft tissue sarcomas in children

    Dana-Farber/Boston Children’s Cancer and Blood Disorders Center provides comprehensive medical and surgical care for children and adolescents with soft tissue tumors.

    We understand that you may have a lot of questions when your child is diagnosed with an acute soft tissue sarcoma.

    • Is it dangerous?
    • Does my child need to be hospitalized?
    • How will it affect my child long term?
    • What do we do next?

    We’ve tried to provide some answers to those questions about pediatric sarcoma in the following pages, and our experts can explain your child’s condition fully. If you have further questions during your hospital stay, we have a resource room that will help answer your questions.

    Our multidisciplinary approach to care ensures in-depth discussion of each case and personalized treatment plans for every patient. We integrate expertise from the following pediatric sarcoma specialists:

    • pediatric oncologists, pediatric hemagologists, surgical oncologists and radiation oncologists
    • pediatric experts from every medical subspecialty
    • highly skilled and experienced pediatric oncology nurses
    • Child Life specialists, psychologists, social workers and resource specialists who provide supportive care for your child before, during and after treatment

    In addition, our cancer center offers the following services:

    • Expert diagnosis by pathologists using advanced molecular diagnostic testing to identify your child’s type of tumor. Knowing the molecular composition of a tumor helps predict which treatments are more likely to work.
    • Access to unique Phase I clinical trials, from our own childhood cancer research investigators, and from the Children’s Oncology Group.
    • Expert surgical care from experienced pediatric surgeons, several of whom developed approaches used at centers across the country.
    • Support services to address all of your child and family’s needs.
    • A weekly survivorship clinic, which set the national standard for childhood cancer survivorship care. This weekly clinic offers ongoing care to manage late effects caused by your child’s cancer or the treatment they received.

    Boston Children's Hospital
    300 Longwood Ave
    Fegan 2
    Boston MA 02115 

    617-355-6021
    fax: 617-730-0456

  • What are soft tissue sarcomas?

    Soft tissue sarcomas are cancerous tumors that begin in the tissues that connect, support or surround organs and other body structures. Soft tissue includes fat, muscles, tendons, nerves, joint tissue, blood vessels and other fibrous tissue.

    • A soft tissue sarcoma can develop almost anywhere in the body.
    • The cause is unknown, but has been linked to genetics.
    • It is rare, accounting for less than 1 percent of all new cancer cases each year and 3 percent of all childhood tumors.
    • Treatment may involve surgery, radiation and/or chemotherapy.
    • It may exist for a long time before being discovered.

    Types of soft tissue sarcomas

    There are many different types of soft tissue sarcoma including:

    • Rhabdomyosarcoma is a tumor of skeletal muscles and the most common soft tissue sarcoma.
    • Desmoid tumor (also called aggressive fibromytosis) affects the fibrous tissue that makes up tendons and ligaments.
    • Infantile fibrosarcoma is a tumor that develops in the tissue that forms tendons and ligaments.
    • Leiomyosarcoma is a tumor that develops in involuntary muscle tissue, usually found in the abdomen, bowels, uterus, and blood vessels.
    • Liposarcoma is a tumor that develops in fat tissue, most often in the abdominal cavity.
    • Malignant fibrous histiocytoma is a tumor that begins in the fibrous tissue in the legs.
    • Peripheral nerve sheath tumor is a tumor that develops in the cells that surround nerves.
    • Synovial cell sarcoma is a tumor that develops in the tissue around joints, usually in the knee.

    What causes soft tissue sarcomas?

    The exact cause of soft tissue sarcomas is not entirely understood, however, studies have indicated that your genes may play a role. Other theories include the following.

    • Limited studies have shown a possible link between soft tissue sarcomas and the development of other types of cancer.
    • Some inherited diseases have also been associated with an increased risk of developing soft tissue sarcomas including Li-Fraumeni syndrome or neurofibromatosis.
    • For some soft tissue tumors, there seems to an association with an Epstein-Barr virus infection.

    Are soft tissue sarcomas common?

    As a group, soft tissue sarcomas (other than rhabdomysarcoma, which is slightly more common), account for less than 1 percent of all new cancer cases each year and 3 percent of all childhood tumors. In the United States, about 900 children and adolescents are diagnosed with soft tissue sarcomas each year.

    What are the symptoms of soft tissue sarcomas?

    Soft tissue sarcomas affect tissue that is elastic and easily moved, which means a tumor may exist for a long time before being discovered, growing large and pushing aside surrounding tissue. While symptoms may vary, the most common include:

    • painless swelling or lump
    • pain or soreness caused by compressed nerves or muscles
    • limping or other difficulty using the legs and feet
  • How does a doctor know that it’s soft tissue sarcomas?

    Diagnostic procedures for soft tissue sarcomas are used to determine the exact type of tumor your child has and whether the tumor has spread. These may include the following.

    • Physical exam, including neurologic function tests including: reflexes, muscle strength, eye and mouth movement, coordination and alertness.
    • X-rays to produce images of internal tissues, bones, and organs onto film.
    • Magnetic resonance imaging (MRI) to produce detailed images of organs and structures within the body and/or spine.
    • Computerized tomography scan (also called a CT or CAT scan) to capture a detailed view of the body, in some cases.
    • Biopsy or tissue sample from the tumor to provide definitive information about the type of tumor; this is collected during surgery.
    • Bone scan to detect bone diseases and tumors as well as to determine the cause of bone pain or inflammation.
    • Complete blood count (CBC), which measures size, number and maturity of different blood cells in a specific volume of blood.
    • Blood tests including blood chemistries
  • Dana-Farber/Boston Children’s Cancer and Blood Disorders Center is home to some of the world's most skilled pediatric oncologists. And while we're known for our science-driven approach to treating conditions like red blood cell disorders, our doctors never forget that your child is a child, and not just a patient.

    We specialize in innovative, family-centered care. From your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs.

    Treatment options will vary greatly, depending on your child's situation. Your child's doctor and other members of your care team will discuss the options with you in-depth. Prompt medical attention and aggressive therapy are important.

    Traditional treatments for soft tissue sarcomas

    Treatments for soft tissue sarcomas may involve a combination of therapies including surgery, radiation, and/or chemotherapy. The most common procedures include:

    Surgery

    Depending on the size and location of the tumor, your child may either need:

    • Limb-salvage surgery helps preserve the limb by removing the tumor and wide margins of healthy tissue surrounding the tumor.
    • Amputation may be necessary if the tumor cannot be removed (for example, if it involves the nerves and blood vessels)

    Radiation therapy

    Our doctors use precisely targeted and dosed radiation to kill cancer cells left behind after your child's surgery.

    Chemotherapy

    Chemotherapy is a drug that interferes with the cancer cell's ability to grow or reproduce.

    • Different groups of chemotherapy drugs work in different ways to fight cancer cells and shrink tumors.
    • Often, a combination of chemotherapy drugs is used.
    • Certain chemotherapy drugs may be given in a specific order depending on the type of cancer it is being used to treat.

    While chemotherapy can be quite effective in treating certain cancers, the agents do not differentiate normal healthy cells from cancer cells. Because of this, there can be many adverse side effects during treatment. Being able to anticipate these side effects can help the care team, parents, and child prepare, and, in some cases, prevent these symptoms from occurring, if possible.

    Chemotherapy is systemic treatment, meaning it is introduced to the bloodstream and travels throughout the body to kill cancer cells. Chemotherapy can be given:

    • as a pill to swallow
    • as an injection into the muscle or fat tissue
    • intravenously (IV), directly to the bloodstream
    • intrathecally, directly into the spinal column with a needle

    Supportive care

    This is any type of treatment to prevent and treat infections, side effects of treatments, and complications, and to keep your child comfortable during treatment.

    What is the recommended long-term care for children treated for soft tissue sarcomas?

    Children treated for soft tissue sarcomas should visit a survivorship clinic every year to:

    • manage disease complications
    • screen for early recurrence of cancer
    • manage late effects of treatment

    A typical follow-up visit may include some or all of the following:

    • a physical exam
    • laboratory testing
    • imaging scans

    Through the David B. Perini, Jr. Quality of Life Clinic at Dana-Farber Cancer Institute, childhood cancer survivors receive a comprehensive follow-up evaluation from their cancer care team.

    Our childhood cancer survivorship clinic is held weekly.

    • In addition to meeting with your pediatric oncologists, your child may see one of our endocrinologists, cardiologists, neurologists, neuro-psychologists or alternative/complementary therapy specialists.
    • We also offer the following services:
      • patient and family education
      • psychosocial assessment
      • genetic counseling
      • reproductive and fertility evaluation and counseling
      • opportunities to speak with other childhood cancer survivors
  • Dana-Farber/Boston Children’s Cancer and Blood Disorders Center is the New England Phase I Center of the Children's Oncology Group. If your child has progressive or recurrent tumor, she may be eligible for a number of experimental therapies available through these groups, or from one of our independent clinical investigators.

    There are many ways in which your child might benefit from our medical research program. Our doctors and scientists have made many breakthrough discoveries about diseases like polio and leukemia; our ongoing innovative research continues to push the boundaries of the way pediatric medicine is practiced.

    It’s possible that your child will be eligible to participate in one of our current clinical trials. These studies are useful for a multitude of reasons:

    Some trials are designed to evaluate the effectiveness of a particular drug, treatment or therapy on a specific disease; others help doctors to better understand how and why certain conditions occur. At any given time,

    We have hundreds of clinical trials underway. Of course, your motives as a parent needn’t be entirely altruistic—you’ll naturally want to know how taking part in a trial can immediately benefit your child. If your child’s physician recommends participation in one of Children’s clinical trials, that likely means that your child’s physician believes that the plan outlined in that trial represents the absolute best, latest care your child can possibly receive.

    And participation in any clinical trial is completely voluntary: We will take care to fully explain all elements of the treatment plan prior to the start of the trial, and you may remove your child from the medical study at any time.

    Research underway

    Our scientists are conducting numerous research studies that will help clinicians better understand and treat soft tissue sarcomas.

    Types of treatment currently being studied include:

    • Angiogenesis inhibitors are substances that may be able to prevent the growth of tumors.
    • Biological therapies is a wide range of substances that may be able to involve the body's own immune system to fight cancer or lessen harmful side effects of some treatments

    Find a clinical trial

    To search for a cancer trial at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, go to

    http://www.dana-farber.org/Apps/clinical_trials/search.aspx (under Pediatric).     

    To search the NIH’s list of clinical trials taking place around the world, go to:

    http://www.clinicaltrials.gov/ct2/search

Request an Appointment

If this is a medical emergency, please dial 9-1-1. This form should not be used in an emergency.

Patient Information
Date of Birth:
Contact Information
Appointment Details
Send RequestIf you do not see the specialty you are looking for, please call us at: 617-355-6000.International visitors should call International Health Services at +1-617-355-5209.
Please complete all required fieldsThis department is currently not accepting appointment requests onlineThis department is currently not accepting appointment requests online

Thank you.

Your request has been successfully submitted

You will be contacted within 1 business day.

If you have questions or would like more information, please call:

617-355-6000 +1-617-355-6000
close
Find a Doctor
Search by Clinician's Last Name or Specialty:
Select by Location:
Search by First Letter of Clinician's Last Name: *ABCDEFGHIJKLMNOPQRSTUVWXYZ
More optionsSearch
Condition & Treatments
Search for a Condition or Treatment:
Show Items Starting With: *ABCDEFGHIJKLMNOPQRSTUVWXYZ
View allSearch
Visitor Information

Contact the Bone and Soft Tissue Program

The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
Close