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 isn’t bone or some other organ, like the breast, lung, or liver. While these organs are also soft, they’re not considered soft tissue because they have other functions.

Soft tissue sarcoma occurs when cancer cells form 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. Other places can include:

• The torso or trunk

• The area around the head and neck

• Within other organs. These can include the uterus, breast, liver, or the gastrointestinal tract.

• Within the abdominal cavity

Q: What causes soft tissue sarcoma?

A: Experts don't know a lot about what causes these tumors. They know that injuries don’t cause sarcomas. Most of the time, there’s 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 have been exposed to chemicals or radiation during their lives should share that information with their healthcare 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 aren’t cancerous. Noncancerous lumps can include:

• 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’re called soft tissue sarcoma. There are many types of soft tissue sarcomas. Some of the more common types include:

• Angiosarcomas

• Fibrosarcomas

• Liposarcomas

• Synovial sarcomas

• Leiomyosarcomas

• Malignant peripheral nerve sheath tumors, such as neurofibrosarcoma or malignant schwannoma

• Gastrointestinal stromal tumors, also called GISTs

• Undifferentiated pleomorphic sarcomas

Q: Can soft tissue sarcoma be prevented?

A: Most people who get soft tissue sarcoma have no known risk factors. For this reason, healthcare providers 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 starts to grow, most people don’t have symptoms. It isn’t until the tumors grow larger (or become advanced) that symptoms become noticeable. Common signs of soft tissue sarcoma can include:

• A lump on the body. The lump is often painless. But it may cause discomfort depending on its location.

• Stomach pain

• Vomiting

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

• Feeling full after not eating 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 healthcare provider.

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

A: Many people with cancer get a second opinion from another healthcare provider. 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 isn’t comfortable with the suggested treatment

• There is more than 1 way to treat the cancer

• The person didn’t 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 healthcare provider who has experience treating this specific type of cancer. Because sarcoma is so rare and because there are very few true sarcoma experts, it’s 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 healthcare provider. 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 or a nearby hospital or medical school. Or ask a support group for names of healthcare providers who can give you a second opinion. Or ask other people who've had cancer for their suggestions.

Q: How is soft tissue sarcoma treated?

A: Surgery, radiation, chemotherapy, and targeted therapy medicines can be used to treat soft tissue sarcoma. The treatment you get depends on the type, size, location, and stage (extent) of the sarcoma, as well as other factors. Local treatments are ones that remove, destroy, or control the cancer cells in one area. Surgery and radiation are examples of local treatments. Systemic treatments are ones that kill or control cancer cells throughout the entire body. Chemotherapy and targeted therapy are systemic treatments. A person with soft tissue sarcoma may have just one treatment. But most people have a mix of treatments.