What is soft tissue sarcoma?

Cancer is made of changed cells that grow out of control. The changed (abnormal) cells often grow to form a lump or mass called a tumor. Cancer cells can also grow into (invade) nearby areas. And they can spread to other parts of the body. This is called metastasis.

Sarcoma is a type of cancer that starts in the body’s connective tissues. These are tissues that support, protect, and connect the body, like bones, nerves, and muscles. Sarcomas are rare in adults. They are more common in children.

Soft tissue sarcomas can start in muscles, tendons, blood vessels, fat, nerves, and deep skin tissues. There are more than 50 different types of soft tissue sarcomas. Most start in the arms and legs. The second most common site is the belly (abdomen). But these cancers can start in almost any part of the body.

Who is at risk for soft tissue sarcoma?

A risk factor is anything that may increase your chance of having a disease. The exact cause of someone’s cancer may not be known. But risk factors can make it more likely for a person to have cancer. Some risk factors may not be in your control. But others may be things you can change. 

The risk factors for soft tissue sarcoma include:

• Exposure to radiation used to treat other cancers, such as breast cancer or lymphoma

• Certain family (inherited) genetic cancer syndromes, such as neurofibromatosis, Li-Fraumeni syndrome, Gardner syndrome or hereditary retinoblastoma

• Exposure to certain chemicals (especially in the workplace), such as dioxin and herbicides containing high levels of phenoxyacetic acid.

• Long-lasting (chronic) swelling in the arms or legs (lymphedema)

• HIV and human herpes virus 8 infections have been linked to Kaposi sarcoma

Talk with your healthcare provider about your risk factors for soft tissue sarcoma and what you can do about them.

Can soft tissue sarcoma be prevented?

Most people who get soft tissue sarcoma don’t have any known risk factors. So there is no sure way to prevent this cancer. 

What are the symptoms of soft tissue sarcoma?

Soft tissue sarcoma often doesn’t cause symptoms until the cancer has grown for some time. Symptoms depend on where the tumor is and how big it is. 

These are some of the more common symptoms of soft tissue sarcoma:

• A new or growing lump or swelling anywhere on your body, which often doesn’t hurt

• Trouble breathing

• Belly pain that’s getting worse

• Blood in your vomit or stool. Tar-like black stool could mean there’s blood in your stool.

Many of these may be caused by other health problems. It's important to see a healthcare provider if you have these symptoms. Your healthcare provider can find out through an exam and testing if you have cancer.

How is soft tissue sarcoma diagnosed?

Your healthcare provider will ask you about your health history, symptoms, risk factors, and family history of disease. A physical exam will be done. Your healthcare provider will consider these things when choosing tests to diagnose sarcoma.

You may also have one or more of these or other tests:

• X-rays

• Ultrasound

• CT scan

• MRI

• PET scan or PET/CT scan

• Biopsy

A biopsy is the only way to confirm cancer. Small pieces of tissue are taken out and checked in a lab by a pathologist for cancer cells. It's important to find out the right diagnosis. The pathologist may recommend doing more tests on the tissue. Your results may come back in about 1 week or may take longer if extra tests are needed.

After a diagnosis of soft tissue sarcoma, you’ll likely need other tests. These help your healthcare providers learn more about the cancer. They can help determine the stage of the cancer. The stage is how much and how far the cancer has spread (metastasized) in your body. It is one of the most important things to know when deciding how to treat the cancer.

Once your cancer is staged, your healthcare provider will talk with you about what the stage means for your treatment. Be sure to ask your healthcare provider to explain the stage of your cancer to you in a way you can understand.

How is soft tissue sarcoma treated?

Your treatment choices depend on the type of sarcoma you have, test results, where the cancer is, and the stage of the cancer. The goal of treatment may be to cure you, control the cancer, or to help ease problems caused by the cancer. Talk with your healthcare team about your treatment choices, the goals of treatment, and the possible risks and side effects.

Types of treatment for cancer are either local or systemic. Local treatments remove, destroy, or control cancer cells in one area. Surgery and radiation are local treatments. Systemic treatment is used to destroy or control cancer cells that may have traveled around your body. When taken by pill or injection, chemotherapy is a systemic treatment. You may have just one type of treatment or a combination of treatments.

Soft tissue sarcoma may be treated with: 

• Surgery

• Radiation therapy

• Chemotherapy

• Targeted therapy

• Immunotherapy

Talk with your healthcare providers about your treatment choices. Make a list of questions. Think about the benefits and possible side effects of each choice. Talk about your concerns with your healthcare provider before making a decision.

What are treatment side effects?

Cancer treatment, such as chemotherapy and radiation, can damage normal cells. This can cause side effects, such as hair loss, mouth sores, and vomiting. 

Talk with your healthcare provider about side effects you might have and ways to manage them. There may be things you can do and medicines you can take to help prevent or control side effects.

Coping with soft tissue sarcoma

Many people feel worried, depressed, and stressed when dealing with cancer. Getting treatment for cancer can be hard on your mind and body. Keep talking with your healthcare team about any problems or concerns you may have. Work together to ease the effect of cancer and its symptoms on your daily life.

Here are some tips:

• Talk with your family or friends.

• Ask your healthcare team or social worker for help.

• Speak with a counselor.

• Talk with a spiritual advisor, such as a minister or rabbi.

• Ask your healthcare team about medicines for depression or anxiety.

• Keep socially active.

• Join a cancer support group in person or online.

Cancer treatment is also hard on the body. To help yourself stay healthier, try to:

• Eat a healthy diet, with a focus on high-protein foods.

• Drink plenty of water, fruit juices, and other liquids.

• Keep physically active.

• Rest as much as needed.

• Talk with your healthcare team about ways to manage treatment side effects.

• Take your medicines as directed by your team.

When should I call my healthcare provider?

Your healthcare provider will talk with you about when to call. You may be told to call if you have any of the following:

• New symptoms or symptoms that get worse

• Signs of an infection, such as a fever

• Side effects of treatment that affect your daily function or don’t get better with treatment

Ask your healthcare provider what signs to watch for and when to call. Know how to get help after office hours and on weekends and holidays.

Next steps

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your healthcare provider if you have questions, especially after office hours or on weekends.