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Frequently Asked Questions About Soft Tissue Sarcoma

Here are answers to some frequently asked questions about soft tissue sarcoma.

Q: What is soft tissue sarcoma?

A: Soft tissue is a term used to describe a part of the body that is not bone or some other organ, like the breast, lung, or liver. While these organs are also soft, they are not considered soft tissue because they have other functions.

Photo of woman holding her lower leg

Soft tissue sarcoma occurs when cancer cells develop in the soft tissues that hold the body together. These tissues include muscles, tendons, blood vessels, fat, nerves, and deep skin tissues. A lump growing on the body may be a sign of a soft tissue sarcoma. About half of soft tissue sarcoma tumors start in the arms or legs. These are other possible locations:

  • The torso or trunk

  • The area around the head and neck

  • Within other organs, such as the uterus, breast, liver, or the gastrointestinal tract

  • Within the abdominal cavity

Q: What causes soft tissue sarcoma?

A: Doctors don't know a lot about what causes these tumors. They do know that injuries do not cause sarcomas. Most of the time, there is no known cause. Rarely, some sarcomas run in families. These families should seek the care of a specialist who deals with the genetic aspects of cancer, and who can talk about the risk with all family members. Also, some sarcomas might be caused by exposure to high doses of radiation or chemicals. People who may have been exposed to chemicals or radiation sometime during their lives should share that information with their health care team.

Q: What types of soft tissue sarcoma are there?

A: There are many types of lumps in the soft tissues of the body. Most lumps are not cancerous. These are some examples of noncancerous lumps:

  • Noncancerous fat collections called lipomas

  • Fluid-filled lumps, called cysts

  • Collections of large abnormal blood vessels called hemangiomas

When lumps grow in the body's soft tissue and have cancer cells in them, they are called soft tissue sarcoma. Examples of soft tissue sarcomas include:

  • Spindle cell sarcomas

  • Liposarcomas

  • Synovial sarcomas

  • Leiomyosarcomas

  • Malignant peripheral nerve sheath tumor, also called neurofibrosarcoma or malignant schwannoma

  • Gastrointestinal stromal tumors, also called GIST

  • Soft tissue Ewing's sarcoma, which includes extraskeletal and peripheral neuroectodermal tumors

Q: Can soft tissue sarcoma be prevented?

A: Most people who get soft tissue sarcoma have no known risk factors. For this reason, doctors have little advice about what can be done to prevent soft tissue sarcoma. A small number of people who get soft tissue sarcoma have been exposed to radiation or chemicals, or have inherited illnesses that increase their risk. A person can have all of these risk factors and not get soft tissue sarcoma. Or they can have none of the known risk factors and still get it.

Q: What are the symptoms of soft tissue sarcoma?

A: When this type of cancer first begins to grow, most people have no symptoms. It is not until the tumors grow larger (or become advanced) that symptoms become noticeable. These are some common signs of soft tissue sarcoma:

  • A lump on the body. The lump is usually painless, but may cause discomfort depending on its location

  • Stomach pain

  • Vomiting

  • Blood in the stool (a red or tar-like black stool)

  • A feeling of fullness after not eating very much

  • Lack of appetite or weight loss

These can be signs of soft tissue sarcoma, but they can also be signs of less serious illnesses. A person with any of these signs should see a doctor to be evaluated.

Q: Should everyone with soft tissue sarcoma get a second opinion?

A: Many people with cancer get a second opinion from another doctor. These are some of the many reasons to get a second opinion:

  • The type of cancer is rare (soft tissue sarcomas are considered somewhat rare) 

  • The person is not comfortable with the suggested treatment

  • There is more than 1 way to treat the cancer

  • The person did not see a cancer expert when the cancer was first found

Plus, people with soft tissue sarcoma may wish to seek a second opinion from a doctor who has experience treating this specific type of cancer. Because sarcoma is so rare and because there are very few true sarcoma experts, it is a good idea to see a sarcoma specialist.

Q: How can someone get a second opinion?

A: There are many ways to get a second opinion:

  • Ask a primary care doctor. He or she may be able to suggest a specialist. This may be a surgeon, medical oncologist, or radiation oncologist. Sometimes these doctors work together at cancer centers or hospitals. Never be afraid to ask for a second opinion.

  • Call the National Cancer Institute's Cancer Information Service. The number is 800-4-CANCER (800-422-6237). They have information about treatment facilities. These include cancer centers and other programs supported by the National Cancer Institute.

  • Seek other options. Check with a local medical society, a nearby hospital or medical school, or a support group to get names of doctors who can give you a second opinion. Or ask other people who've had cancer for their recommendations.

Q: How is soft tissue sarcoma treated?

A: Surgery, radiation, and chemotherapy are all used to treat soft tissue sarcoma. These are called local or systemic treatments. Local treatments are ones that remove, destroy, or control the cancer cells in one certain area. Surgery and radiation therapy are examples of local treatments. Systemic treatments are ones that kill or control cancer cells throughout the entire body. Chemotherapy is a systemic treatment. A person with soft tissue sarcoma may have just one treatment or, more commonly, a mix of treatments.