Soft tissue sarcomas can also develop in organs such as the stomach, womb, skin and small bowel.
There are many types of soft tissue sarcomas, but the ones that are most common in young people are:
- Rhabdomyosarcomas: these are sarcomas that grow in the muscles that you are able to control and move. Rhabdomyosarcomas mainly occur in the head, neck or pelvis, but can also occur in the arms or legs.
- Synovial sarcomas: these sarcomas may start near to joints, such as the knee or elbow.
- Fibrosarcomas: these are sarcomas that occur in the fibrous tissues that join together parts of the body, such as connecting the muscles to the bones.
Ewing’s sarcomas are normally a type of bone cancer, but they can also develop in the soft tissue. Soft tissue Ewing’s sarcomas are treated in a similar way to the ones that develop in the bones, so you may wish to look at our bone cancer page for more information.
Sarcomas are relatively rare in children and young people. Around two-thirds are diagnosed in people aged 50 or above. However, they can occur in anyone of any age. Rhabdomyosarcomas, synovial sarcomas and fibrosarcomas are the most common types of sarcomas in children and young people.
The first noticeable symptom of a soft tissue sarcoma may be a painless lump that continues to grow or does not go away. A lump measuring more than 5cm across or increasing in size is more likely to be a sarcoma. Your child may experience some soreness as the lump grows and presses against nerves and muscles.
Soft tissue sarcomas are usually diagnosed at the hospital, following a biopsy. A biopsy involves a specialist taking a sample of the cells found inside your child's lump and examining them under a microscope to see if cancer cells are present. Your child may also need X-rays, scans and blood tests.
The specialist will need to determine the size of your child's tumour, how deep it is, whether there are lymph nodes with cancer in them, and whether the cancer has spread.
Surgery is the most common treatment for soft tissue sarcomas. This involves removing the cancer and some of the tissue surrounding it. If the sarcoma is small, and it’s possible to remove it completely, then your child might not need any further treatment. The type of surgery they need will depend on the size and location of their sarcoma. For some sarcomas in the arm or leg, your child may need ‘limb-sparing surgery’ (where just the cancerous area is removed, not the whole limb) or an amputation.
Chemotherapy involves targeting the cancer cells with anti-cancer drugs. Your child may need chemotherapy before their surgery to shrink the size of the tumour and make it easier to remove, or afterwards to destroy any remaining cancer cells.
Radiotherapy is often used for soft tissue sarcomas that affect the arms or legs. It may be used as an alternative to surgery, or be given after surgery to target any remaining cancer cells.
Your care team can help manage these, and other, side effects. Some side effects depend on which part of your child’s body is being treated, so ask your doctor or nurse what to expect. In general, people having radiotherapy might have the below side effects.
Proton beam therapy
For certain types of soft tissue sarcoma, your specialist may recommend a specialised form of radiotherapy called proton beam therapy, which can involve travelling abroad.
If your child is undergoing chemotherapy, they may experience tiredness, sickness, diarrhoea and temporary hair loss. They will also be at greater risk of infections.
Radiotherapy can also make your child feel tired and sick. They might experience skin irritation similar to sunburn and hair loss in the area that is being treated.
Talk to your specialist or nurses about how you can manage these side effects, or see the side effects section of our website for more information.
After your child's treatment is complete they will still need to be seen regularly at an outpatient clinic. At this clinic, your specialist will be looking for any signs that your child's cancer has returned (this is known as a relapse). They will also check that your child's major organs, such as their heart and lungs, are still functioning correctly and haven’t been affected by their cancer treatment.
Once your child's risk of relapse has reduced, ongoing follow-up will focus on looking out for potential long-term side effects of treatment. The risk of this depends on the type of cancer your child had and the treatment they received. A personalised surveillance plan is usually created that outlines the specific long-term follow-up and ongoing investigations that they require.
Many people are at low risk of future health problems but some will have significant ongoing health needs. Talk to your specialist about the potential long-term side effects of your child's treatment.
- Read about the different treatments for cancer
- Prepare for life on the ward with our practical tips for hospital stays
- Parents tell us it's hard talking to their child about cancer and treatment. Here are our tips and tools on how to make it easier
Updated November 2017, next review due 2019.