Children's Cancer

Soft tissue sarcomas start in the cells of connective tissue. These include cells that make up our muscles, fat, lining of joints and blood vessels. Soft tissue sarcomas can therefore develop almost anywhere in the body.

Rhabdomyosarcoma

Rhabdomyosarcoma is the most common type of soft tissue sarcoma. It forms from young cell types (called rhabdomyoblasts) that make up skeletal muscles.

Rhabdomyosarcomas are most common in younger children (under 10 years of age). However, they can develop in teenagers and adults.

Other soft tissue sarcomas

Other types of soft tissue sarcomas include:

• Ewing sarcoma of soft tissue
• liposarcoma, which forms in fat
• synovial sarcoma, which can form near a joint such as the hip, knee, ankle or shoulder
• leiomyosarcoma, which forms in smooth muscle.

Chance of a cure

One of your biggest concerns on learning your child has cancer may be about their chance of being cured.

Due to major advances in treatment, many children treated for cancer now survive into adulthood. Children diagnosed with cancer between 2004 and 2012 have a 5-year survival rate of 85%. In the 1980s, the 5-year survival rate for all cancers was about 73%.¹

Every cancer is different, so it’s important to talk to your child’s doctor about your child’s diagnosis, treatments and long-term survival. Long-term survival is also called the outlook or prognosis. It on depends several things, including:

• age of your child at diagnosis
• extent or stage of the cancer
• how the cancer cells look under a microscope (the shape, function and structure of the cells)
• how the cancer responds to treatment
• cancer or tumour biology, which includes
  • the patterns of the cancer cells
  • how different the cancer cells are from normal cells
  • how fast the cancer cells are growing.

To learn more about survival for soft tissue sarcoma system in children, visit Australian Cancer Childhood Statistics Online.

References

[1] https://cancerqld.blob.core.windows.net/content/docs/Childhood-Cancer-in-Australia-1983-2015.pdf

Clinical trials

It’s possible that your child may be able to be part of a clinical trial. Clinical trials are research investigations to test new treatments, interventions or tests to prevent, detect, treat, or manage various diseases or medical conditions. The patients involved in clinical trials are volunteers.¹

With regard to cancer, researchers run clinical trials to test new ways to:

• treat cancer
• find and diagnose cancer
• manage cancer symptoms and treatment side effects.

If a trial is available, taking part in one will be entirely the family’s decision.

It’s important to note that new treatments are strictly regulated and must be approved before they can be used in a clinical trial. Your child’s doctor will explain everything about the trial and give you detailed written information. If you wish your child to be part of the trial, you will need to give permission.

Participating in a clinical trial may or may not directly benefit your child. But the results of clinical trials today help children with cancer in the future. If you’re interested in participating in a clinical trial, ask your child’s doctor if there are any suitable for your child.

You can find further information on our Clinical trials and research page. 

References

[1] https://www.australianclinicaltrials.gov.au/what-clinical-trial

Diagnosis

When your child is diagnosed with cancer, it can feel overwhelming. This phase involves finding out if your child has cancer, and determining the type of cancer they have. Children’s cancer can be difficult to diagnose, as many symptoms are similar to those caused by less serious conditions, or injuries. This means that your child may need several tests and medical appointments before you receive confirmation that your child has cancer.

If your doctor thinks your child has soft tissue sarcoma, they may undergo the following tests:

• medical history and physical exam
• medical imaging, such as:
  • X-ray
  • ultrasound
  • computed tomography (CT) scan
  • magnetic resonance imaging (MRI)
  • bone scan
  • positron emission tomography (PET) scan
• biopsy, perhaps with a test for genetic changes to help find the best way to treat your child
• lumbar puncture (spinal tap)
• bone marrow aspiration and biopsy.

Our section, How is cancer diagnosed? explains these tests in more detail.

Staging

Doctors use staging to describe how much the cancer has grown and whether it has spread to other parts of the body. Some of the tests for soft tissue sarcoma will also help to stage the tumour. Staging measures:

• where the tumour is
• how big the tumour is
• what nearby organs it affects
• if the cancer has spread to other parts of the body.

Your doctor will use this information to determine the best way to treat the disease. Staging will also give your doctor an idea of how well these treatments are likely to work (prognosis). How doctors assess the stage or extent of disease varies. Different staging systems may be used depending on your diagnosis and may include a description such as Stage I to IV and/or Group 1-4.  Once all your staging investigations are complete your doctor will inform you of your child’s stage and what that means for them.

You can find out more information about staging for soft tissue sarcomas at National Cancer Institute (United States). 

Risk factors

A risk factor is anything that increases a person’s chance of getting a certain condition or disease. Researchers know about some risk factors that increase the chance of developing cancer. But, for most children with cancer, the cause is unknown.

What we do know is that if a child develops cancer, it’s not because of something they, or their parents did to cause it. No one is to blame if a child develops cancer.

Even if your child has a risk factor, it doesn’t mean they will develop cancer. Many children with a risk factor will never develop cancer. And others with cancer may have had no known risk factors. Even if a child with a risk factor develops cancer, the risk factor may not have had much to do with it.

Researchers don’t completely understand what causes soft tissue sarcomas. But there are some things that are linked to a higher chance of getting them.

Genetic conditions

Research links certain genetic conditions with a higher chance of getting soft tissue sarcomas. These include:

• Beckwith–Weideman syndrome
• Costello syndrome
• Li–Fraumeni syndrome
• Neurofibromatosis type 1
• Noonan syndrome
• Werner syndrome
• Familial adenomatous polyposis
• Changes in the Rb (retinoblastoma) gene.

If your child has one of these genetic conditions, they will need specific care. Your health care team will talk to you about which ongoing tests your child will need.

Childhood cancers that have links to genetic conditions may also affect the risk for other family members. You can ask your child's treatment team if you or your family should get genetic counselling.

To learn more about genetic conditions, see the children's cancer glossary or the Centre for Genetics Education.

Exposure to radiation

High doses of radiation will increase a child’s risk of getting soft tissue sarcoma.

Certain virus infections

Children with HIV and Epstein–Barr Virus infections at the same time have a higher chance of getting soft tissue sarcomas.

Support and more information

A diagnosis of cancer in a child is difficult for all involved. It’s normal for you and your family to feel overwhelmed, scared, anxious or angry.

If you or others around you are having trouble coping, make sure you speak to your child’s treatment team. They have helped and supported many other families who have been through what you’re currently going through. Sometimes just letting other people know how you’re feeling helps you feel less alone.

Most children’s hospitals will allocate a social worker to each family to provide support throughout treatment. If you need support, contact your hospital-based social worker to let them know how you’re feeling and to see what support can be made available to you and your family, including music therapists, play therapists or education support staff.

The following webpages and organisations also offer support and/or extra information for children with cancer and their families:

• Living with children's cancer has information about physical, emotional and practical issues during and after diagnosis and treatment. 
• Organisations that can provide support and information.
• Redkite is a national organisation that provides emotional support, financial assistance, information and resources to families who have a child with cancer. You can reach them through their support line 1800 733 548 (1800 REDKITE), which is open (9am-7pm AEST), email support@redkite.org.au or live chat on www.redkite.org.au
• Canteen provides a service called Canteen Connect, an online community for young people aged 12-25 dealing with their own or a close family member’s cancer, and Parent Connect, an online community with resources, information and peer support on parenting through cancer. Online counselling is available seven days a week, including evenings. Visit https://canteenconnect.org/ or call 1800 835 932.
• The Cancer Council in your state or territory can give you: 
  • general information about cancer 
  • information on resources and support groups in your area. 
• You can call the Cancer Council Helpline from anywhere in Australia on 13 11 20.
• Any of the major children's hospitals and networks in your state or territory can provide information about childhood cancer.

For more information about childhood soft tissue sarcomas, see:

• Rhabdomyosarcoma, from the American Cancer Society
• Treatment PDQs® from the National Cancer Institute (United States), including
  • Childhood soft tissue sarcoma
  • Ewing sarcoma
  • Childhood rhabdomyosarcoma
• Soft tissue sarcoma – child and Childhood rhabdomyosarcoma, from Rare Cancers Australia.

Note that information from international organisations may not always apply to children in Australia.

Symptoms

The symptoms of soft tissue sarcoma depend on the part of the body that is affected.  The main symptom is a lump or swelling. The lump may or may not cause pain. The lump may get bigger.

Other symptoms may appear such as pain or weakness if the tumour grows and presses on nearby parts of the body such as:

• organs
• tissues
• nerves
• blood vessels.

These symptoms will vary, depending on where in the body the tumour has formed.

Most lumps are not cancer, however if you are concerned about any of the symptoms above then get them checked by your GP.  The earlier cancer is found the better.

Treatment

Your team of doctors, called a multidisciplinary team (MDT), will care for and treat your child, and will ensure that all your child’s needs are considered while they have cancer treatment. The section called The treatment team has further  information about this.

Treatment for soft tissue sarcoma depends on:

• the age of your child
• the stage of the cancer
• where in the body the cancer is
• other factors.

Doctors will suggest treatments based on your child’s situation. Treatment may involve one or more of the following:

• surgery
• chemotherapy
• radiation therapy
• targeted therapy
• other treatments
• careful observation.

Surgery

Most children with soft tissue sarcoma have surgery to remove all or part of the tumour.

See How is cancer treated – surgery for more detail about cancer surgery.