What is a soft tissue sarcoma?

Soft tissue sarcomas are cancerous tumours that grow in the soft tissues of your body. This may be in the muscles, fat, cartilage, nerves, tendons, lining of the joints or the blood vessels.

Soft tissue sarcomas can grow almost anywhere in your body. Sarcomas are rare, but they are one of the most common cancers in children.

Watch this video from Cancer Australia about what it can be like to have cancer as a child.

What are the types of soft tissue sarcoma?

There are more than 70 types of soft tissue sarcoma, and each one is different.

Some types of soft tissue sarcoma that can affect children are:

• liposarcoma, which grows from fat cells
• rhabdomyosarcoma, which grows from muscle cells
• synovial sarcoma, which grows near a joint, such as the elbow or knee
• leiomyosarcoma, which grows from smooth muscle cells
• tumours that grow in the fibrous connective tissue, such as desmoid tumours and fibrosarcomas

What are the symptoms of soft tissue sarcoma?

The symptoms of soft tissue sarcoma depend on where the tumour is located. The main symptom is a painless lump or swelling under the skin.

If the tumour is pressing on nerves, organs or blood vessels, there may be pain or weakness in part of the body.

Remember that a lump or swelling under the skin is usually not a soft tissue sarcoma — this cancer is very rare.

What causes soft tissue sarcomas in children?

Experts don't know why some children develop soft tissue sarcoma.

It's more common in children who:

• have been exposed to radiation
• were born with certain genetic conditions (including neurofibromatosis type 1)
• have HIV at the same time as the Epstein-Barr virus (which causes glandular fever)

How is a soft tissue sarcoma diagnosed?

Your doctor will ask about your child's symptoms and examine them.

There are different tests to diagnose soft tissue sarcoma. Scans are usually done first, including:

• x-rays
• CT scans
• MRI scans
• PET scans

A biopsy to remove a small piece of the tumour for testing under a microscope is needed for diagnosis. This will help your doctors to work out:

• whether it is a sarcoma
• what sort of soft tissue sarcoma it is
• the best way to treat it

How is a soft tissue sarcoma treated?

If your child has a soft tissue sarcoma, they will be looked after by a team of health professionals, known as a multidisciplinary team.

Your child might see specialists such as a:

• paediatric oncologist (doctor who specialises in treating children's cancer)
• medical oncologist (doctor who specialises in medicines used to treat cancer)
• radiation oncologist (doctor who specialises in using radiotherapy to treat cancer)
• surgeon
• nurses
• social workers
• rehabilitation therapists
• psychologist

The best treatment for your child will depend on:

• the type of tumour
• where it is
• how quickly it is growing
• how your child reacts to the treatment

Most children will have a combination of treatments. Options can include:

• Surgery — to remove all or part of the tumour.
• Chemotherapy — anti-cancer medicines are used to destroy the cancer cells.
• Radiotherapy — high-energy x-rays are used to destroy cancer cells.
• Targeted therapy — medicines target the cancer cells, and have fewer side effects than chemotherapy.
• Immunotherapy — this treatment uses the immune system to fight cancer.
• Other medicines — some children are given hormone therapy, corticosteroids or non steroidal anti-inflammatory drugs (NSAIDs) to help treat soft tissue sarcomas.

Close monitoring may be recommended for some children.

Resources and support

• The Cancer Council has information and support for people with cancer. Call 13 11 20.
• Rare Cancers Australia has information about soft tissue sarcoma and patient support. Call 1800 257 600.
• The Children's Cancer Foundation provides family support and information about the latest treatments.
• Cancer Australia has links to support organisations for children with cancer and their families. It can also help you find clinical trials that your child could participate in, plus a list of children's hospitals in Australia.

Diverse languages and cultures

Cancer Council has cancer resources for patients and carers including:

• multilingual resources
• information for Aboriginal and/or Torres Strait Islander peoples
• interpreter services

Canteen and Camp Quality

• Canteen helps young people and their parents to deal with cancer. Call 1800 835 932.
• Canteen's and Camp Quality's online community, Parenting through cancer, provides free expert advice, counselling and a chance to connect with other parents in similar situations.
• Camp Quality's Kids' Guide to Cancer app provides age-appropriate cancer education for kids up to 15 years old.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with 24 hours a day, 7 days a week.