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.
1. Initial investigation and referral
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:
Blood test
To check whether your overall health, your blood cells, liver, and kidneys are working.
Magnetic resonance imaging (MRI) scan
A scan where a powerful magnet and radio waves are used to create a detailed picture of the body.
Computed tomography (CT) scan
Computers and x-rays are used to create a detailed picture of the body.
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.
Questions you might want to ask
- Can I choose whether I go to a public hospital or private practice?
- Can I choose the specialist I see?
- How much will appointments cost me?
2. Diagnosis and staging
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:
CT guided biopsy
This is the most common method of biopsy for a soft tissue or bone tumour. A sample of cells will be taken from the lump using a needle with local anaesthetic to numb the area. A CT scan is used to guide the biopsy needle. Biopsies for bone and soft tissue cancers are specialised procedures and should only be carried out by a specialist who does them regularly.
An expert pathologist will then look at the sample of cells under a microscope and determine the exact diagnosis. This may involve special testing of the cells and usually takes several days, sometimes longer.
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.
Questions you might want to ask
- What is sarcoma?
- What tests will I have?
- How much will tests/appointments cost?
- Where should I be treated, and do I have a choice?
- What stage is my cancer?
- What support services are available to me?
3. Treatment
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.
Surgery
Surgery is the most common treatment for most types of sarcoma. The type of surgery used will depend on where the cancer is and its size. It is important that this surgery is performed by a surgeon who is very experienced in surgery on sarcoma and performs several of these operations every year.
Reconstructive surgery
Reconstructive surgery aims to restore function and appearance to the affected area after surgical removal of bone or tissue. When this involves the limb, the preference is for reconstruction (limb salvage surgery). Reconstruction can involve replacing bone, soft tissue, or function of muscles and nerves.
Limb ablative surgery (amputation)
Occasionally it is not possible to remove all of the cancer without badly affecting the arm or leg. The doctor may advise that the only effective treatment will be to remove the limb.
Radiation therapy
Radiation therapy (also called radiotherapy) may be given to you before or after surgery and is most often used for soft tissue sarcomas.
Chemotherapy
Chemotherapy may be given to you either before surgery to try and shrink the cancer, or after surgery to stop it coming back. It is most often used for bone sarcomas.
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.
Clinical trials
You may be offered to take part in a clinical trial. Clinical trials are used to test whether new treatments are safe and work better than current treatments. Many people with cancer are now living longer, with a better quality of life, because of clinical trials.
Complementary therapies
Speak to your healthcare team about any complementary therapies (including dietary supplements like vitamins) you use or would like to use. Something as common as vitamins might not work well with your treatment.
Questions you might want to ask
- What treatment do you recommend?
- Where will I have to go to have treatment?
- What will treatment cost and how much of the cost will I have to pay myself?
- What activities/exercise will help me during and after treatment?
- Can I still work?
- How will the treatment affect my day-to-day life?
- Who are the people in my team and who is my main contact person?
- What side effects could I have from treatment?
- Who do I contact if I am feeling unwell or have any questions?
- Will treatment affect my ability to have a child?
4. After treatment
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.
Questions you might want to ask
- Who should I contact if I am feeling unwell?
- What can I do to be as healthy as possible?
- Where can I get more help?
5. Living with cancer
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.
Questions you might want to ask
- Where is the cancer and has it spread?
- What are my treatment options?
- What are the chances that the treatment will work this time?
- Is there a clinical trial available?
- Where else can I get support?
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.
Questions you might want to ask
- What can you do to reduce my symptoms?
- What extra support can I get if my family and friends care for me at home?
- Can you help me to talk to my family about what is happening?
- What support is available for my family or carer?
- Can I be referred to a community support service?
6. Questions of cost
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.
7. Further support
Sarcoma cancer support
You can speak to specially trained staff at Cancer Council on 13 11 20. They can answer your questions about the effects of cancer, explain what will happen during treatment and link you to support groups and other community resources.
If you need an interpreter, call TIS (the Translating and Interpreting Service) on 13 14 50.
For support and advice for carers, call the Carers Association on 1800 242 636.
More support options
Australian Cancer Survivorship Centre
Has general and tumour-specific information, primarily focused on the post-treatment survivorship phase
• Telephone: (03) 9656 5207
• Website: www.petermac.org/cancersurvivorship
National Health Services Directory
A directory providing information on local hospital and community services
• Website: www.nhsd.com.au
beyondblue: the national depression initiative
Information on depression, anxiety and related disorders, available treatment and support services
• Telephone: 1300 22 4636
• Website: www.beyondblue.org.au
Cancer Australia
Information on cancer prevention, screening, diagnosis, treatment and supportive care for Australians affected by cancer, and their families and carers
• Telephone: 1800 624 973
• Website: www.canceraustralia.gov.au
Care Search: Palliative Care Knowledge network
Information for patients and carers on living with illness, practical advice on how to care, and finding services
• Telephone: (08) 7221 8233
• Website: www.caresearch.com.au
Optimal care pathways have been developed for health professionals and health services. However, patients and carers may find useful information in this version to help understand the processes their treating health professionals are following.