This information is for people with soft tissue sarcoma who'd like to know more about their cancer and its treatment. It doesn't replace talking to your doctors or nurses. However, we hope it'll help you make decisions with your doctor about your treatment.
What is soft tissue sarcoma?
Soft tissue is the name for all the supporting tissues in the body, apart from the bones. They include fat, muscle, nerves, deep skin tissue, blood vessels and the tissue that surrounds joints (synovial tissue).
These tissues support and connect all the organs and structures of the body. They're known as connective tissue. A soft tissue sarcoma is a rare type of cancer that forms as a painless lump (tumour) in any one of these soft tissues. They most commonly develop in the thigh, shoulder and pelvis. Sometimes they can grow in the abdomen or chest (trunk).
Cancer care pathways
For an overview of what to expect during all stages of your cancer care, read or download the What To Expect guide for soft-tissue tumours or sarcoma (also available in Arabic, Chinese, Greek, Hindi, Italian, Tagalog and Vietnamese – see details on the site). The What To Expect guide is a short guide to what is recommended for the best cancer care across Australia, from diagnosis to treatment and beyond.
Types of soft tissue sarcoma
There are over 70 types. They're named after the abnormal cells that make up the sarcoma. The most common type is malignant fibrous histiocytoma (MFH), which is made up of many abnormal spindle-shaped cells.
Liposarcoma is the next most common type of soft tissue sarcoma. It's made up of many abnormal fat cells. Other types of soft tissue sarcoma include:
- leiomyosarcoma and rhabdomyosarcoma, from muscle tissues
- angiosarcoma, from blood vessels
- ewing sarcoma and primitive neuroectodermal tumour (PNET)
- malignant peripheral nerve sheath tumour (MPNST or PNST)
- gastrointestinal stromal sarcoma (GIST) (this is treated differently from other types of soft tissue sarcoma)
- stromal sarcoma from supporting tissues
- kaposi sarcoma of the skin
- synovial sarcoma.
How common is soft tissue sarcoma?
Soft tissue sarcoma isn't common. Around 178 Victorians develop one of these cancers each year.
Soft tissue sarcoma can develop at any age. Although it's more likely to happen in people over the age of 55, young adults may also be affected.
There's almost an equal risk for males and females.
The causes of most sarcomas are unknown. However, there are several risk factors.
There's a very small risk for people who've had radiotherapy. The risk is higher for people who had high doses of radiotherapy at a very young age. Most people who've had radiotherapy in the past won't develop a sarcoma.
Some rare, inherited conditions can put people at more risk of soft tissue sarcoma. These are:
- Von Recklinghausen disease (neurofibromatosis): non-cancerous lumps that develop in the nerves under the skin and over time can turn into sarcoma
- Li-Fraumeni syndrome: a genetic condition that increases the risk of many cancers in one family, including soft tissue sarcoma
- Retinoblastoma: a rare type of eye cancer mainly found in children.
Most people know if one of these very rare conditions runs in their family, and if so, that they may pass it to their children.
A small number of people develop sarcoma due to genetic changes that happen during their lifetime, rather than inheriting a faulty gene.
Sarcoma usually doesn't cause symptoms in its early stages. As it grows over a period of months, you may develop a painless lump. You may begin to have pain as the lump grows and presses on nerves and muscles. Other symptoms will depend on where in the body the sarcoma is.
Sometimes a soft tissue sarcoma may be mistaken for a benign fatty lump (lipoma) or bruise (haematoma). This can delay tests that would help make the right diagnosis.
Most people who develop a painless lump don't have a sarcoma. It's much more likely to be a less serious condition. However, if you have symptoms for more than two weeks, you should see your doctor.
If doctors think you may have a soft tissue sarcoma, they'll carry out blood tests, x-rays and scans. These tests are needed to rule out other conditions. If the results suggest that you may have sarcoma, doctors will refer you to a specialist centre.
You may need to have a biopsy. This is the only sure way to diagnose a soft tissue sarcoma. A biopsy means taking a sample of cells from the lump and examining them under a microscope.
Your doctor will use a fine needle to do this. You'll have local anaesthetic to numb the area before the needle is put into the lump.
A tissue biopsy should only be carried out by a specialist who does them regularly and has special expertise in this area. It's important that the biopsy is done properly, to reduce the chance of the cancer spreading. It could also affect the type of treatment that you may be able to have.