Follow-up — for years, on purpose
After surgery and treatment for sarcoma, you will have regular follow-up appointments for several years. These appointments come with regular surveillance scans — usually an X-ray or MRI of the treated area, and a CT of the chest, sometimes a PET scan — and they are also your standing opportunity to raise any concern with the treating team.
The schedule is deliberate: appointments are closer together at first and spread out over time. Follow-up this long is not a sign of worry about you personally; it is how sarcoma care is done, because finding any recurrence early gives the most options.
If something changes between appointments — a new lump, new pain, or you simply want to be seen sooner — do not wait for the next scheduled visit. Contact your clinical nurse consultant and an earlier review can be arranged.
Your body, and how you feel about it
Cancer treatment and surgery often change your body: scars, weight change, hair loss during chemotherapy, or bigger changes after major surgery. It is normal to find these changes difficult — physically and mentally — and adjusting takes time.
Take it seriously if the way you feel about your body starts interfering with the way you want to live: being reluctant to leave home, withdrawing from people, avoiding intimacy with a partner, or persistent low mood. These are common, and they respond to support. Speak to the psychologist during your stay, your CNC, or your GP about seeing a mental health professional after you go home. This is part of treatment, not an extra.
Palliative care — what the words actually mean
At some stage your specialist may suggest involving the palliative care team. This is not the same as end-of-life care, and a referral does not mean bad news. These teams now step in far earlier for anyone living with cancer, and their purpose is to help you live as fully as possible — above all by keeping pain and other symptoms under control. Their support can be given at home, in hospital, or wherever else suits you.
Your decisions
Treatment is always your choice. You may decide not to have a particular treatment, or to have only treatment that reduces pain and discomfort. If you are weighing a decision like that, talk it through with your healthcare team, your GP, and your family or carer — you will be supported, not argued with.
Support — people worth calling
Start with your clinical nurse consultant or doctor: they can answer questions about your own diagnosis and connect you with a psychologist or other support.
- RPA Virtual Hospital — Sarcoma & Tumour Advice and Support Service (24/7): 1800 463 918
- RPA Sarcoma Clinic: (02) 9515 1960
- Cancer Council: 13 11 20 — specially trained staff who can explain treatment, and link you to support groups and community resources
- Cooper Rice-Brading Foundation (sarcoma-specific support): crbf.org.au
- Rare Cancers Australia: rarecancers.org.au
- Redkite (support for children and young people with cancer): redkite.org.au
- Canteen / Youth Cancer Services: canteen.org.au
- Translating and Interpreting Service (TIS): 13 14 50
- Carers Association (support and advice for carers): 1800 242 636
- Can Assist (country NSW patients): canassist.org.au