Signs and what to do
Cancer can change over time. Signs that your cancer may be progressing include:
- New or worsening symptoms (pain, shortness of breath, fatigue)
- Scan results showing growth
- Blood test changes
- Treatment side effects becoming harder to manage
What to do:
- Talk to your oncologist about what you’re experiencing
- You’ll likely have scans to assess the situation
- Your treatment plan may be adjusted
Rebiopsy and next-line treatment options
If your cancer progresses, your oncologist may recommend:
Rebiopsy - Taking a new sample of cancer cells to test. Cancer can change over time, new mutations might have developed, and different treatments might now be appropriate.
Next-line treatments - Second-line, third-line treatments are common. Many people benefit from multiple different treatments over years. New treatments are constantly becoming available. Clinical trials may offer access to newer therapies.
Managing uncertainty and fear
It’s normal to feel scared about the future.
What might help:
- Focus on today or this week, not years ahead
- Talk to a counselor who understands cancer
- Connect with others who are living with uncertainty
- Find meaning in daily activities and relationships
- Consider mindfulness or meditation
- Let yourself have bad days - you don’t have to be strong all the time
Advance care planning and directives
Advance care planning means thinking about and documenting your wishes for future medical care.
What it involves:
- Thinking about what quality of life means to you
- What medical treatments you would or wouldn’t want
- Who should make decisions if you can’t
- Where you’d like to be cared for
Advance Care Directive:
- Legal document stating your wishes
- Different names in different states
- Ensures doctors and family know your wishes
- You can change it anytime
How to start:
- Talk to your doctor or palliative care team
- Download forms for your state
- Discuss with family
- Some people find it comforting to have this sorted; others aren’t ready - both are okay
Wills, power of attorney, and affairs
Getting legal and financial affairs in order can provide peace of mind.
Essential documents:
Will - States who gets your assets, names guardians for children under 18, names executor to manage your estate. Can be updated anytime.
Power of Attorney - Appoints someone to make financial decisions if you can’t. Can be “enduring” (continues if you lose capacity).
Medical Power of Attorney - Appoints someone to make medical decisions if you can’t.
Where to get help:
- Solicitor (can be expensive but thorough)
- Public Trustee (lower cost option)
- Some community legal centers offer free help
- Financial counselor at your hospital
Talking to loved ones about prognosis
Deciding whether and how to talk about prognosis is deeply personal.
Things to consider:
- What do you want to know?
- What do your loved ones want to know?
- Children need age-appropriate honesty
- You can tell different people different amounts
Tips for difficult conversations:
- Choose a quiet time and place
- Be honest but don’t feel you need to share everything
- Let people react in their own way
- It’s okay to cry together
- Return to the conversation over time
Understanding palliative care (early and late stages)
What palliative care is:
- Specialist care focused on quality of life
- Helps manage symptoms like pain, nausea, fatigue
- Provides emotional and spiritual support
- Can work alongside cancer treatment
- Can be involved early in your diagnosis
When to ask for palliative care:
- Anytime you have symptoms affecting quality of life
- When treatment is causing difficult side effects
- For help with advance care planning
- You don’t have to be dying to benefit from palliative care
Pain and symptom management
Pain and other symptoms can almost always be well managed.
Common symptoms in advanced cancer:
- Pain
- Fatigue
- Shortness of breath
- Nausea
- Loss of appetite
- Anxiety
How they’re managed:
- Medications (from simple painkillers to stronger opioids)
- Other therapies (radiation for bone pain, oxygen for breathing)
- Complementary approaches (massage, relaxation)
- Emotional and spiritual support
Myths and misconceptions
Myth: Palliative care means giving up on treatment
Truth: Palliative care can work alongside treatment and helps you live better
Myth: Morphine means the end is near
Truth: Morphine is used for pain management at all stages
Myth: If you start palliative care, you can’t change your mind
Truth: You can always change your treatment approach
Hospice and home care options
As cancer advances, you have choices about where you receive care:
Options:
- At home - With support from palliative care nurses, GPs, family
- Hospice/palliative care unit - Specialized facility, usually for short-term symptom management
- Hospital - If you need intensive management
- Aged care facility - If you’re already living there or need ongoing care
Home care support:
- District nursing
- Palliative care at home services
- Equipment (hospital bed, oxygen, etc.)
- Meals on Wheels
- Help with personal care
Your preferences may change over time, and that’s okay.
Death doulas and end-of-life coaching
Death doulas (also called end-of-life doulas) provide non-medical support:
What they offer:
- Emotional and spiritual support
- Help planning for end of life
- Practical support for families
- Companionship
- Legacy projects
They work alongside medical teams and are usually not covered by Medicare (some offer free or sliding scale services).
Support for family and caregivers
Support available:
- Carer counseling through cancer services
- Carer support groups
- Carer payment and allowance (Centrelink)
- Respite care to give carers a break
- Bereavement support after death
Resources:
- Carers Australia
- Your hospital social worker