Sarcoma (bone and soft tissue tumours)Your guide to best cancer care

It can be overwhelming after being told that you have or may have sarcoma (bone and soft tissue tumours). A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'

This support resource can help to guide you, your family, and your friends through this experience.

Information and support

If you need additional information or would like support, you can visit the soft tissue sarcoma page or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

If you need a translator, call TIS on 13 14 50 or visit the TIS National website.

Your general practitioner (GP) should do a check-up to see if they can find what is making you feel unwell. The doctor will assess your symptoms (for example, a lump or a painful swelling), conduct a physical examination and arrange tests.

Initial tests you may have:

Referrals

If sarcoma is suspected, you must be referred promptly to a sarcoma specialist for further testing. Your GP will provide the specialist with information about your medical history, whether there is a history of cancer in your family, and results of the initial tests. Your GP should also discuss your needs (including physical, psychological, social and information needs) and recommend sources of reliable information and support.

You can bring a family member or friend with you to your appointments.

The specialist will do more tests to see if you have sarcoma (bone and soft tissue tumours). This process of working out if you have a medical problem is called making a diagnosis. You might have one test or a mix of tests:

This test should be done within two weeks.

These tests will give the specialist more information about the cancer, such as where exactly it is in your body, if the cancer is growing or has spread, and what stage it is at. This is called staging, which helps to work out the best treatment for you.

The term sarcoma describes over fifty different types of cancer, each of which may be treated differently. To ensure you receive the best care, your specialist will arrange for a team of health professionals to plan your treatment based on your preferences and needs. Your specialist will tell you when the team will be discussing your case.

You will be treated by a team of experts, and you may need more than one treatment type to get the best results. The team will work with you and your family or carer to plan your treatment.

If appropriate, your team should also discuss the option of fertility preservation and having a baby in the future. You may be referred to a fertility service to help you evaluate your options.

You might have one treatment or a mix of treatments:

Treatment for bone sarcoma and soft tissue sarcoma may include surgery, chemotherapy and radiotherapy in a range of combinations.

For more information, visit Cancer Treatment. Supportive care (treatment or services that support you through a cancer experience) are also available.

You can ask your GP for a referral to another specialist for a second opinion.

For more information on clinical trials, visit the Australian Cancer Trials page.

Recovery

Cancer treatment can cause a range of physical and emotional changes. Sarcoma can come back after treatment. This is why it is important that you have regular check-ups.

During treatment, a rehabilitation program may be developed for you. If you had an amputation, this would include seeing a specialist who makes false (prosthetic) limbs. A physiotherapist or exercise physiologist can help you become as independent and mobile as possible.

After treatment is completed, your specialist team will see you regularly for follow-up appointments. During these visits your specialist will arrange tests to watch for signs of cancer recurrence or treatment side effects and support your return to health.

Follow-up care plan

Your healthcare team will work with you to make a plan for you and your GP. This plan will explain:

• who your main contact person is after treatment
• how often you should have check-ups and what tests this will include
• understanding and dealing with side effects of treatment
• how to get help quickly if you think the cancer has returned or is worse

Many people worry that the cancer will return. Your specialist and healthcare team will talk with you about your needs and can refer you to other healthcare professionals and community support services.

Other information you may get:

• signs and symptoms to look out for if the cancer returns
• late effects of treatment and the specialists you may need to see
• how to make healthy lifestyle choices to give you the best chance of recovery and staying well

For more information, visit After Cancer Treatment.

Sometimes cancer can come back after treatment. It can come back in the same place or can appear somewhere different in your body.

If cancer returns, you may be referred to the specialist or the hospital where you were first treated, or to a different specialist.

Treatment will depend on how far the cancer has spread, how fast-growing it might be, and the symptoms you are experiencing.

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about your future treatment and medical needs.

Advance care directive

Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.

For more information, visit Advance Care Planning Australia.

Palliative care

Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can, including managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.

Speak to your GP or specialist or visit Palliative Care Australia.

Making treatment decisions

You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.

For more information, visit Advanced Cancer Treatment.

Decisions about cost

You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.

If you have concerns about costs, talk to your healthcare team or a social worker about:

• being bulk-billed or being treated in the public system
• help with accommodation during treatment
• the possible financial impact of your treatment

You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.