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Life after treatment
There is no right way to feel if you have been diagnosed with a cancer such as soft tissue sarcoma. Feeling a range of emotions is normal and you may feel anxious, fearful, angry or lonely. Many people need emotional support before, during and after treatment, particularly if they have major surgery like an amputation or a lot of tissue is removed. Adjusting to living with visible scars, changes to your physical appearance, changes to your lifestyle and bodily function can be hard and take time.
It can help to talk things through with a counsellor, psychologist, friend or family member. Talk to your medical team or call Cancer Council 13 11 20 about what support services are available.
For more on this, see Emotions and cancer.
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Practical and financial support
There are many services that can help you manage with practical or financial issues caused by having cancer. Benefits, pensions and hardship programs can help pay for prescription medicines (for example the Australian Government’s Pharmaceutical Benefits Scheme [PBS]), transport costs or utility bills. Ask the hospital social worker which services are available in your area and if you are eligible.
For additional income, you may be able to access your superannuation early in certain circumstances, or claim on insurance policies such as income protection, trauma, and total and permanent disability (TPD).
Managing your ability to work or study, particularly during cancer treatment, is important to consider and will depend on your personal situation.
For more on this, see Cancer and your finances and Cancer, work and you.
If you need legal or financial advice, you should talk to a qualified professional. Cancer Council offers free legal and financial services in some states and territories for people who can’t afford to pay – call 13 11 20 to ask if you are eligible.
Life after treatment
Once your treatment has finished, you will have regular check-ups to confirm that the cancer hasn’t come back. Ongoing surveillance for sarcoma involves a schedule of ongoing scans and physical examinations. Let your doctor know immediately of any health problems between visits.
Some cancer centres work with patients to develop a “survivorship care plan” which includes a summary of your treatment, sets out a clear schedule for follow-up care, lists any symptoms to watch out for, possible long-term side effects, identifies any medical or emotional problems that may develop and suggests ways to adopt a healthy lifestyle. Maintaining a healthy body weight, eating well and being physically active are all important. If you don’t have a care plan, ask your specialist for a written summary of your cancer and treatment and make sure a copy is given to your GP and other health care providers.
For more on this, see our general section on Living well after cancer.
If the cancer comes back
For some people, soft tissue sarcoma does come back after treatment, which is known as a recurrence. This is most likely to happen within the first five years after treatment. If the cancer does come back, treatment will depend on where the cancer has returned in your body and may include a mix of surgery, chemotherapy and radiation therapy.
In some cases of advanced cancer, treatment will focus on managing any symptoms, such as pain, and improving your quality of life without trying to cure the disease. This is called palliative treatment. Palliative care can be provided in the home, in a hospital, in a palliative care unit or hospice.
When cancer is no longer responding to treatment, it can be difficult to think about how you want to be cared for towards the end of life. But it’s essential to talk about what you want with family and health professionals, so they know what is important to you.
For more on this, see Palliative care, Living with advanced cancer and Facing end of life.
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Dr Susie Bae, Medical Oncologist, Peter MacCallum Cancer Centre, VIC; Tony Bice, Consumer; Dr Denise Caruso, CEO Australian and New Zealand Sarcoma Association, VIC; Emma Gardner, Nurse Coordinator, Bone and Soft Tissue Unit, Peter MacCallum Cancer Centre, VIC; Jonathan Granek, Consumer; Thelma Lobb, Consumer.
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