What is soft tissue sarcoma?

Soft tissue sarcomas are cancers that develop from cells in the supporting tissues of the body. This type of cancer is rare. Each year, about 3,300 people in the UK are diagnosed with a soft tissue sarcoma.

Soft tissue sarcomas can develop in any tissues that support, connect, surround and protect the organs of the body. This includes:

  • fat
  • muscle
  • nerves
  • fibrous tissues
  • tendons and ligaments
  • blood vessels.

Soft tissue sarcomas can develop anywhere in the body. The most common parts of the body for them to develop in are the arms and legs. Nearly half of all soft tissue sarcomas start there.

They can also develop in other areas, such as:

  • the womb (uterus)
  • stomach
  • skin
  • bowel
  • the area at the back of the tummy called the retroperitoneum
  • head and neck area.

Sarcomas that start in the bone are treated differently from soft tissue sarcomas. We have separate information about bone sarcoma (primary bone cancer).

Sometimes it is hard to tell whether a sarcoma has started in soft tissue or bone. Some types of sarcoma, such as Ewing tumours, can start in either the bone or the soft tissue.

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Booklets
31 Oct 2018
This booklet is about a type of cancer called soft tissue sarcoma. It is for anyone who has been diagnosed...

Types of soft tissue sarcoma

There are many types of soft tissue sarcoma. They usually grow and develop differently from each other. Each type is named after the type of cell it started from. It is not named after the part of the body where it started to grow.

We have more information about types of soft tissue sarcoma. Your doctor or specialist nurse can tell you more about the type you have.

We also have more detailed information about the following types:

Symptoms of soft tissue sarcoma

The symptoms of soft tissue sarcoma depend on the part of the body that is affected. The main symptom is a lump or swelling. For example, a lump in the leg or arm, or other part of the body, that is:

  • getting bigger
  • bigger than 5cm (2in) – about the size of a golf ball
  • painful or tender.

Most soft tissue lumps are not cancer. But if you notice any of these symptoms, get them checked by your GP. We have more information about symptoms of soft tissue sarcoma.

Causes of soft tissue sarcoma

The causes of soft tissue sarcomas are not known. There are certain things that can affect the chances of developing a soft tissue sarcoma. These are called risk factors.

Having risk factors does not mean you will get sarcoma, and people without risk factors can still develop it. We have more information about the risk factors and causes of soft tissue sarcoma.

Soft tissue sarcoma diagnosis

Tests and diagnosis

You may have some of the following tests to diagnose soft tissue sarcoma:

  • Ultrasound scan
    An ultrasound uses soundwaves to make a picture of the inside of the body or limb.
  • Biopsy
    A biopsy means the doctor takes a sample of tissue or cells from the lump (tumour) to check under the microscope for cancer cells.

We have more information about diagnosing soft tissue sarcoma that explains more about these and other tests. Waiting for test results can be a difficult time, we have more information that can help.

Staging and grading

The results of your tests give your cancer specialist information about:

  • the grade of the cancer – how the cancer cells look under the microscope
  • the stage of the cancer - its size and whether it has spread from where it started.

We have more information about staging and grading of soft tissue sarcoma. Your cancer doctor or specialist nurse will explain how it may help plan your treatment.

Treatment of soft tissue sarcoma

A team of specialists will meet to discuss the best possible treatment for you. This is called a multidisciplinary team (MDT).

Your treatment may depend on:

  • your general health
  • where the sarcoma started in the body
  • the size of the tumour
  • the grade of the sarcoma.

Your cancer doctor or specialist nurse will explain the different treatments and their side effects. They will also talk to you about things to consider when making treatment decisions.

The following treatments may be used to treat soft tissue sarcoma. Most people need a combination of these treatments.

You may be offered some treatments as part of a clinical trial.

  • Surgery

    Surgery is the most common treatment for soft tissue sarcoma. The type of operation depends on where the sarcoma is. If the sarcoma is small and it is possible to remove it completely, surgery may be all you need. Some people need a bigger operation and help to rehabilitate afterwards. For example, if the sarcoma is in a limb. You may have other treatments before or after surgery.

  • Radiotherapy

    Radiotherapy uses high-energy rays to destroy cancer cells. For bigger sarcomas, radiotherapy is usually given after surgery to reduce the risk of the sarcoma coming back. It can also be given before surgery to shrink the tumour and make it easier to remove. Radiotherapy is also used treat sarcomas that cannot be removed completely with surgery,or more advanced sarcomas.

  • Chemotherapy

    Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. Chemotherapy may sometimes be given before or after surgery. It may also be used to treat advanced sarcoma.

  • Targeted therapy

    Targeted therapy drugs target something in or around the cancer cell that is helping it grow and survive. This is one of the main treatments for a type of sarcoma called gastrointestinal stromal tumour (GIST). Targeted therapies may also be used to treat other types of soft tissue sarcoma that have spread or come back after treatment.

If soft tissue sarcoma comes back

Sometimes, the sarcoma may come back or spread to other parts of the body. The most common area for it to spread to is the lungs. This is called secondary lung cancer. If tests show you have only a small amount of cancer in the lungs it may be possible to have surgery to remove that area of the lung.  

If the cancer comes back somewhere else, your doctor will talk to you about your different treatment options. The most common treatment if this happens is chemotherapy.

After soft tissue sarcoma treatment

Most people recover well after treatment for a soft tissue sarcoma. Some people take longer and need extra help. If you had a bigger operation or other treatments recovery takes longer.

Before you go home, the hospital staff will talk to you about your situation. Some people may still need physiotherapy or other support when they go home. This is to make sure you can be as independent as possible.

If you are worried about going home, talk to the hospital staff in advance. They can arrange any help and support you might need.

Follow-up

After your treatment finishes, you will have regular check-ups with your cancer doctor or specialist nurse. They will tell you how often and for how long you will need to have these.

It will depend on the type of treatment you had and the risk of the cancer coming back. We have more information about follow-up after treatment.

You may have regular tests, including chest x-rays, to check for any signs of the cancer coming back.

You can talk to your doctor or nurse about any problems or worries at these check-ups. But if you notice any new symptoms or have any problems between appointments, contact your doctor or nurse for advice.

Coping with body changes

After treatment, your body may not look or feel the same to you. You may have scars from surgery. If you had surgery to a limb there may be changes in how you move. After surgery to the head and neck you may need support from a speech and language therapist.

If you have had an arm or leg removed, the change in your body may be very difficult to accept and adapt to.

Your healthcare team will give you a lot of support. Let them know if you are struggling to cope with body changes.

Feeling like you look different from other people can affect your self-confidence. At first, you may feel shocked and upset. But these feelings usually improve as you adapt and learn how to manage the changes. Each person is different in how long this takes.

We have more information about coping with

Sarcoma UK can also offer support.

Well-being and recovery

Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.

Making small changes such as eating well and keeping active can improve your health and wellbeing and help your body recover.

How we can help

Macmillan Cancer Support Line
The Macmillan Support Line offers confidential support to people living with cancer and their loved ones. If you need to talk, we'll listen.
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