Soft tissue sarcoma

Understanding your diagnosis

Soft tissue sarcoma

Understanding your diagnosis star_border Save this page

Your test results provide a lot of information about your cancer.

This may include:

  • the cells it started in (cancer type)
  • whether it has spread from where it started (cancer stage)
  • whether it is likely to grow quickly or slowly (cancer grade).

Your specialist uses this information to explain how the cancer could affect you in the future (your prognosis), and what your treatment options are. Your specialist may arrange further tests if more information is required.

What you need to know

Types of soft tissue sarcoma

Soft tissue sarcomas can start almost anywhere in the body, but are more common in the legs, arms, abdomen, trunk and head and neck.

They start in the supporting connective tissues of the body, which include:

  • fat
  • muscle
  • blood vessels
  • nerves
  • tendons
  • tissues around the joints.

There are more than 50 different types of soft tissue sarcoma. Each type is named after the type of normal tissue they look like under the microscope.

The most common types are: 

  • undifferentiated pleomorphic sarcoma ​​
  • leiomyosarcoma​ 

Other types include:

  • gastrointestinal stromal tumour (GIST)
  • liposarcoma
  • rhabdomyosarcoma
  • angiosarcoma
  • Kaposi sarcoma
  • synovial sarcoma.
The way soft tissue sarcomas are described and named is confusing. Ask your doctor to explain what type of sarcoma you have and anything else you should know about it.

Soft tissue sarcoma stage

The cancer stage describes how far a cancer has grown and spread at the time of diagnosis. This is based on the size of the cancer and the results of biopsies, scans and other tests.

Knowing the stage of a cancer helps doctors to work out the best treatment options. It also means the person with cancer can fully understand their situation and discuss any concerns they have.

Staging by location

Sarcomas are staged in different ways depending on what part of the body they start in. The group used are:

  • arms, legs and trunk (chest, back and abdomen)
  • retroperitoneum (area behind the peritoneum)
  • head and neck
  • organs inside the chest or abdomen.

The stage is generally based on the TNM system and the grade of the cancer. These may also be used to give a stage number to the cancer.

TNM system

The TNM system is often used in cancer staging. It measures three categories:

  • T (tumour) – how large the tumour (cancer) is
  • N (lymph node) – whether it has spread into any of the surrounding nodes
  • M (metastasis) – whether it has spread to other parts of the body.

Cancer grade

The grade of a cancer is based on how abnormal the cells look under a microscope. Cancers with very abnormal cells are likely to grow and spread faster. 

  • Grade 1 (low grade) – the cells look similar to normal cells and are growing and dividing slowly.
  • Grade 2 (intermediate grade) – the cells don’t look like normal cells and are growing and dividing faster than normal cells.
  • Grade 3 (high grade) – the cells look very abnormal and are growing and dividing quickly.
It can be difficult to understand cancer staging. Ask your doctor to explain your cancer stage and what it means for you.

What to ask or talk about

Talking about prognosis

Prognosis means what is likely to happen to you in the future because of your cancer. You may find it hard to talk about prognosis but it can help you make decisions about the treatment and care you want.

Everyone’s cancer is different, and everyone responds differently to treatment. Because of this, doctors can’t tell you exactly what will happen to you. Instead, they can give you the best information they have about what to expect.

Doctors work out prognosis based on statistics. These show what happens in large groups of people with cancer. They cannot predict what will happen to you or any other individual person. 

checklist Checklists

Use our checklists to find helpful tips or questions to ask.

Next steps

Treatment planning

Your specialist will share information about you and your cancer with a multidisciplinary team (MDT) to decide the best treatment options for you.

You may need more than one type of treatment or have a choice of treatments. You may also need to see other specialists during treatment planning.

Dealing with your diagnosis

Getting a cancer diagnosis is very distressing for the person with cancer, and their carers, family and friends. Different people react in different ways. They can be upset and angry or just in shock. Many people find it difficult to take in all the information and understand what it will mean for them.

The situation can be especially difficult for people who get a diagnosis of advanced cancer. 

If you need to speak to someone about your diagnosis, you can call the Cancer Council on 13 11 20.

Where to get help

There are people you can talk to for more information or support.

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