Living with advanced cancer

Although advanced cancer usually can’t be cured, it can often be effectively controlled. It’s important to realise that incurable doesn’t mean  untreatable – sometimes treatment can be very effective. Treatment may be able to shrink, stop or slow the spread of advanced cancer. In other cases, it can help to relieve symptoms.

Treatment can often keep the cancer under control and maintain quality of life, sometimes for several years. When this happens, the cancer is  considered to be a chronic (long-term) disease.

Your treatment options will depend on where the cancer started, how far and where it has spread to, and whether it is hormone dependent or has certain genetic changes. Your doctor will also consider your symptoms and general health when recommending treatment.

Common treatments to control the cancer and relieve side effects include chemotherapy, radiation therapy, surgery, targeted therapy, hormone therapy and immunotherapy. These may be used alone or in combination.

Some people join clinical trials to try new treatments.

Treatments can be used for different reasons, so talk to your health care team about the aim of each treatment.

Some people with advanced cancer can stay reasonably well and continue usual activities – working, playing sport and socialising – for a long time. Other people may need to focus on their health. It will depend on how you feel, and how cancer or treatment changes various aspects of your life.

Emotional changes – Being told you have cancer, or that it’s come back, can have a huge emotional impact. The actual cancer and any treatment you have can also change how you feel – for example, some hormone treatments directly affect people’s moods. It can be difficult to cope with the feeling of uncertainty and the stress of changes to your work, finances and relationships.

 Side effects – The cancer, or its treatment, may cause a range of side effects, such as pain, nausea, fatigue or breathlessness. These can affect what you can comfortably do and your sense of independence.

Money concerns – You or a partner may need time off work, or you may have treatment or other costs that add up. This can lead to worry about  money, or a need for financial assistance.

Practical issues – There may be ways to make life more comfortable, such as using medical equipment, modifying your home, or getting home help. If you travel a long way from home to the hospital, you may need assistance with transport or somewhere to stay. Call Cancer Council on 13 11 20 to find out about options open to you.

Some people feel anxious about having palliative care, or avoid it altogether, because they think it’s only for people who are at the end of their life. But that’s not the case at all. In fact, studies show that starting palliative care early can help you to feel better for longer.

The goal is to help you maintain your quality of life at any stage of the illness. By offering a range of services and treatment, palliative care can help you live as fully and as comfortably as possible. It does this by looking after your physical, emotional, cultural, social and/or spiritual needs. For  example, palliative care can include strategies to help you to manage pain, move around, eat well, and cope with your feelings.

Palliative care, which is sometimes called supportive care, might be something you choose to use now and then, or it may be ongoing. It’s now very common for people to use palliative care for several years.

There’s a range of health professionals involved in providing palliative care, from doctors and nurses to physiotherapists, dietitians and psychologists – even volunteers and carers.

Thinking about what is most important to you can guide palliative care services. For some people that may be help going travelling; for others it’s about spending more time with family. Where possible, help can be provided to focus on what is important to you.

Support for families and carers is also offered through palliative care services.

Not all people with cancer – even advanced cancer – will die from it. For some people, improved treatments can keep advanced cancer under control for months or years. Sometimes other health issues (such as heart disease) become more serious than the cancer.

When told they have advanced cancer, many people will want an idea of how long they may have left to live. Others may prefer not to know, or even talk about it. It’s a very personal decision. If you want to know the expected outcome (prognosis) of the cancer, talk to your doctor. It is a difficult question to answer because everyone is different. Your doctor can only give you an estimate based on what usually happens to people in your situation. The actual time that you have could be longer or shorter – it’s not possible to know for sure.

This not knowing, or feeling of uncertainty, can be one of the most challenging aspects of living with advanced cancer.

When faced with the thought of dying, people often think about what they want to do in the time they have left. They may begin to live day by day, plan a big trip or do practical tasks, such as preparing a will.

"The prognosis is based on statistics, and it’s entirely possible that you will be on the good side of those  statistics, and make it way beyond whatever your oncologist tells you.” JOHN

It’s natural to have a lot of different emotions. If you didn’t know you had cancer, a diagnosis of advanced cancer can sometimes seem like a double blow. If it’s cancer that’s come back, you may be more upset than the first time you were diagnosed. Or you may even feel relieved if you suspected there was something wrong, because now you know why.

Everyone reacts differently – especially when told that the cancer is probably too advanced to cure. Give yourself time to absorb what is happening. There is no right or wrong way to react. You might feel one way at first and a completely different way later. It might help to know that your reactions are natural, and that there is support available to manage a range of emotions. Common feelings include:

Disbelief – It can be hard to accept that there are limited treatment options or that the cancer can’t be cured. While denial can give you time to adjust to reality, if it’s ongoing you may delay getting treatment or help. Discuss your diagnosis with your doctor, no matter how you feel.

Fear or anxiety – It is frightening to hear that the cancer is advanced when you are diagnosed, or that it has come back or spread. You may be anxious after the shock of diagnosis, or fearful of dying. If these emotions become overwhelming, they may lead to panic attacks.

Anger – You may feel angry that you weren’t diagnosed earlier, or because you’ve had to deal with cancer already, or because you feel your life will be cut short. Some people feel angry that, despite leading a healthy lifestyle, they have been diagnosed with cancer. This anger may be directed at family or friends, at doctors, or you may be angry at yourself. Asking “why me?” is completely understandable.

Guilt – It’s common to blame yourself for the cancer. You may look back at possible symptoms you think you missed, or fear that your lifestyle may have somehow contributed to the cancer. Remember that the reason cancer spreads or doesn’t respond to treatment is usually unknown. You may also worry about how your family will cope or feel guilty that they may have to take care of you.

Uncertainty – You may have less control over your life and your emotions, and this may leave you feeling helpless or powerless. It can be hard to adjust to an uncertain future or get used to the feeling of not knowing, especially if you are used to being organised or independent.

Loneliness – Even if you have people around, you may feel lonely at times. Feeling like nobody understands what you’re going through can be isolating. While family and friends are usually supportive, some may have trouble coping with the diagnosis, or misunderstand it. Some people may even distance themselves from you.

Sadness or depression – Feeling sad after a cancer diagnosis is a natural response. And your family and friends are often feeling down too. If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, talk to your doctor as you may have depression. Support is available for depression.

There are some simple things that you can try to help you to cope, or feel more in control, after an advanced cancer diagnosis. Which of these  strategies works best will be different for everyone, and can change depending on how you are feeling at the time.

Find out more information – Understanding what to expect, and being able to plan for any changes can make you feel more in control. Your oncology team (doctors, nurses and allied health practitioners) can give you information and help you to plan.

Talk about how you’re feeling – If you start to feel overwhelmed, let your general practitioner (GP) know. Counselling or medicine – even for a short time – can be helpful. Your GP may be able to refer you for free or subsidised sessions to talk with a psychologist. Beyond Blue also has information about coping with depression and anxiety.

Share online – Use email, social media or a blog to stay in touch with family and friends. You can also visit the Cancer Council Online Community to connect with others in a similar situation.

Join a support group – There are some face-to-face, online and phone support groups where people with cancer meet regularly to talk about their experiences.

Try complementary therapies – Relaxation, meditation and massage can help you to cope. Complementary therapies can lower your stress levels, ease anxiety, and improve your mood.

Enjoy the little things – Try to focus on the small things that are still possible – like having a coffee with a friend or visiting your favourite places.

Accept help – Even when your friends are genuinely willing to help, it can sometimes be hard to ask. You might want one friend or relative to  coordinate offers of help and update people on how you are. Online tools can also help organise volunteers, e.g. Gather My Crew.

Draw on spirituality – Some people find meaning and comfort in their religion, faith or spiritual beliefs. Others may experience spirituality in other ways, such as spending time with close family and friends or being out in nature. A cancer diagnosis can sometimes challenge your beliefs. It might help to talk about your feelings with a spiritual care practitioner (sometimes called a chaplain), religious leader or counsellor.

Whether you’ve just been newly diagnosed or are living with advanced cancer, there will probably be new challenges to deal with, and you may want to explore different ways to help you cope.

Managing uncertainty – Having advanced cancer means not knowing what lies ahead. This can be hard to adjust to – especially if you’re someone  who is used to being in control. Some people say they avoid thinking about what the future may hold by keeping busy or distracting themselves from their thoughts. For others, it’s about learning to live with not knowing. There is no right or wrong way to manage this uncertainty.

Loss and grief – A diagnosis of advanced cancer often involves a series of losses – from the loss of good health and changing relationships, to the change of your future plans or a loss of independence. You will probably need time to grieve for these and any other losses.

Different people deal with loss in different ways. It’s not as simple as going through stages or just having a good cry. It is a process, and the intensity of your feelings can vary. Some people describe different “waves” of grief, from mild to overwhelming. You may experience grief gradually and also at different times – maybe at diagnosis, if you start to feel unwell, or if treatment stops working.

A social worker or counsellor can give you strategies to manage grief and loss. The palliative care team can also provide grief support or refer you to someone who can help. For some people an advanced cancer diagnosis can raise spiritual questions. If this is the case for you, it might help to talk to your religious or spiritual care practitioner.

Being realistic – People with cancer are often told to “stay positive”. And while having hope is important, the reality is that cancer is often frightening and serious. Pressure to “put on a brave face” or be optimistic all the time can drain your energy and stop you saying how you really feel.

Not feeling positive can be a very normal part of having cancer, so try to be realistic about what is happening to you. It can help to talk to someone about how you’re coping and any fears or sadness you have. Being honest with others can help you get support or help if needed.

Sometimes you can tell a counsellor or psychologist worries or thoughts that you might not want to share with family or friends. A GP can usually refer you to a psychologist for a number of free or subsidised sessions. Ask your GP for a referral to a psychologist or find your own at  the Australian Psychological Society. You can also call Cancer Council on 13 11 20 for help finding someone to talk to. You may be able to access counselling through your cancer treatment centre. Carers can call the Carer Gateway Counselling Service on 1800 422 737 for sessions through their local Carers Association.

Looking for meaning – Everyone has different ideas of what gives life meaning. For some people, it might be found in religion or family; for others, it could be found in nature or art. It’s common for people diagnosed with advanced cancer to re-evaluate what life means for them.

A diagnosis of advanced cancer does not always stop people from trying to achieve long-held goals, but they may start to focus on what is most important to them. Some people want to live life at a slower pace, others may feel an urgency to make the most of every day.

You may want to discuss meaning in your life with someone close to you, whether that’s a spiritual care practitioner, or a professional counsellor or psychologist. If you’d prefer not to talk to anyone, you could write in a journal, meditate or pray.

Staying hopeful – It can be hard to feel hopeful when you’ve been told you have advanced cancer. What you hope for may also change with time. You may look forward to good days with understanding people or the love of family and friends. Or you may find yourself hoping you will maintain your  sense of independence or stay symptom-free.

Some people try activities they’ve never tried before and find hope in this new side of their life. Others find hope in small projects, such as completing a scrapbook or planning a trip with their family.

While the cancer and its treatment can limit activities, some people discover new strength in themselves, and this gives them hope. You may find that connecting with other people in a similar situation may also be helpful.

Faith or spiritual beliefs can provide comfort to some people in tough times. Those who find hope in these beliefs describe feelings of optimism that are hard to explain to others. Cancer can also test people’s beliefs. You may find it helpful to talk to a spiritual care practitioner, counsellor or psychologist about spiritual support.

Celebrating life – Having advanced cancer is often a chance for people to reflect on their life and all that they have done, and to think about their legacy. You could talk with family and friends about the special times you have shared together.

You might like to share some of your belongings with family and friends as a permanent reminder. You could also write letters or stories of your life, record special memories, make a short film or video featuring you with your friends, review or arrange photo albums, document your family’s history or family tree, make a playlist of favourite songs, gather treasured recipes into a cookbook, or create artwork or music.

The emotional support provided by a partner can affect how you cope with the diagnosis. Not knowing what the future holds, financial worries, and feeling isolated can challenge a relationship. And partners can feel just as distressed, depressed and anxious as the person with cancer. Being open and honest with each other may help you both cope with sadness and uncertainty, and your relationship may grow stronger.

Differing emotions, ideas or opinions can lead to tension. Your partner may not want to talk about the cancer or may distance themselves to cope. To avoid tension, tell your partner what you need most. Let them know if listening to you is more important than what they say. Explain that you’re grateful for their support and you know it’s hard for them too. If them doing everything for you is upsetting, tell them that it’s important for you to feel involved, and independent, even if it’s just in small tasks.

Changes in sexuality and intimacy

Humans are sexual beings, and intimacy can add to the quality of our lives and help us to connect. Depending on where the cancer has spread, or the type of treatment you’re having, you can feel sore and find even a gentle hug uncomfortable. Your partner may avoid physical contact for fear of rejection, or out of concern that they will cause you pain. It takes time to adapt to physical and emotional changes. Most people find it is easier to re-establish contact by lying close together in bed. If sexual intimacy is no longer possible or what you want, you may prefer to cuddle, stroke or massage. It can help to talk about your feelings and concerns about any sexual changes in your relationship.

Download our booklet ‘Sexuality, Intimacy and Cancer’

For many families, it’s natural to want to look after a parent-figure, or a sister or brother, if they are unwell. This may also be the most practical option if you’re unwell. But it also means that your child or sibling may help or care for you in a way that you’re not used to.

Being reliant on someone you are used to looking after may be stressful or upsetting. You may feel frustrated or that people are interfering or doing things you never expected them to do. It may seem like an invasion, even if you are grateful for help. Or like you’re being told what to do, when you already feel like you have no control. These role-reversals can be difficult for both sides. Try to be honest about what you are happy for family to do for you now, and in the future. You can consider home help or talk to a social worker about other options.

Being a carer

Anyone who provides care is a carer. Sometimes your family and friends become your carers – even if they don’t see it that way. This shift can be confronting for all.

Caring for a person with advanced cancer can be challenging. Even a short break from a caring role, which is called respite care, can give both of you much needed time out.

The demands on a carer may increase as the cancer advances, so they may need emotional, practical and physical support too.

Download our booklet ‘Caring for Someone with Cancer’

When you are told you have advanced cancer, one of the biggest worries may be how you will tell the young people in your life. It’s natural to want to protect children, but it is also important to let them know what is happening. They will often sense something has changed, and if they aren’t told what it is, they can become scared or anxious. Talk to them as soon as you feel ready.

If you’ve explained cancer and its treatment before, it might be easier to start a conversation. But you might find it hard to talk about the cancer spreading and being difficult to treat. It might be helpful to think ahead about the questions children may ask and prepare some suitable answers.

How to tell children about cancer

• Be honest and explain what you know about the cancer using straightforward words that suit their age.
• Keep your explanations as simple as possible, and be guided by their questions so you don’t offer more information than they may want or can handle.
• Expect that children may respond differently depending on their age. This may range from displays of love and offers of help, to feeling guilty,  withdrawal or acting out and bad behaviour.
• Discuss ways your children might be able to help you, while still managing their other commitments or responsibilities.
• Spend time with your children or grandchildren so you can create meaningful memories together.

Download our booklet ‘Talking to Kids About Cancer’

Friends can be invaluable for emotional and practical support, especially if you’re not close to your family or they live far away. Some friends can listen to whatever you say – complaints, hopes, fears – without judging you or trying to cheer you up or give advice. Others may avoid you or not want to talk about the diagnosis.

If friends seem to stay away, they may not know what to say or assume you don’t want visitors. Let them know if you want to keep in touch. They may avoid talking about the cancer, worried it will upset you. You could explain if, and how much, you want to talk about it, or if it’s okay to just discuss other things. If friends are overprotective or won’t leave you alone, it can help to set boundaries to maintain your independence.

Conversations with friends

• Set limits around how much you want to share – you can simply say you’d like to talk about something else.
• Ask friends how they feel about the diagnosis – this gives them permission to discuss the situation.
• Be as specific as possible when friends ask how they can help.
• If you don’t need particular help from friends or family, let them know that their offer is still appreciated and that you might need something in the future.
• If friends offer information or advice that you’re not comfortable with – such as details of an alternative therapy they heard of – change the topic or let them know you are happy with the care provided by your treatment team. You could say that it’s something to consider if you are looking to change your treatment.

Chemotherapy is the most commonly used treatment when cancer has spread. It circulates throughout the body to affect cells that divide rapidly such as cancer cells. It can kill cancer cells or slow their growth.

There are many types of chemotherapy drugs, and these are often used in different combinations and strengths. Treatment is usually given over a few hours or days, followed by a rest period of 1–4 weeks. Most people have several cycles of treatment. Chemotherapy drugs are usually given by injection or drip into a vein (intravenously) in hospital, but some can also be taken as tablets or capsules (orally) at home.

Side effects – Some chemotherapy drugs can cause tiredness, bowel changes, nausea and hair loss. Most side effects are temporary and can be prevented or reduced. Different types of chemotherapy drugs have different side effects – for instance, not all of them cause hair loss.

Download our booklet ‘Understanding Chemotherapy’

Some cancers grow in response to particular hormones. These cancers are known as hormone-dependent cancers. Hormone therapy (also called  endocrine therapy) uses synthetic hormones to block the effect of the body’s natural hormones. The aim is to lower the amount of hormones the tumour receives. This can help slow down the spread of the cancer.

If you have breast or uterine cancer, you may be offered hormone therapy. If you have prostate cancer, the therapy is known as androgen deprivation therapy (ADT).

Side effects – Common side effects include tiredness, hot flushes, mood changes, osteoporosis, weight gain and sweating. Other side effects may impact your sex life, including changes in sex drive, trouble getting or keeping erections or vaginal dryness. Hormone therapy can also affect your fertility. It may bring on menopause symptoms in females. If you have already been through menopause, hormone drugs called aromatase inhibitors may be used.

Targeted therapy is a promising drug treatment that attacks specific features of cancer cells, known as molecular targets, to stop the cancer growing and spreading. The development of targeted therapy drugs has led to improved survival rates for several types of cancer, and some people have seen encouraging outcomes during targeted therapy treatment. These drugs are becoming an increasingly important part of cancer treatment and may help:

• after surgery to destroy any remaining cancer cells
• to treat advanced cancer that hasn’t responded to other treatment, or cancer that has come back
• as maintenance treatment for advanced cancer.

Targeted therapy drugs often cause the signs and symptoms of cancer to reduce or disappear. This means many people can return to their usual  activities. The drugs may need to be taken long term, and you will need to have regular tests to monitor the cancer.

Some targeted therapy drugs have been approved for use in Australia for the treatment of a range of cancers including bowel, breast, cervical, kidney, lung, ovarian, stomach and thyroid, as well as melanoma and some forms of leukaemia, lymphoma and myeloma. Targeted therapy drugs have been effective in treating some people with these cancers, but they may not be the best treatment for everyone with advanced cancer.

The Pharmaceutical Benefits Scheme (PBS) subsidises the cost of some targeted therapy drugs for certain cancers. Targeted therapy drugs not on the PBS are usually expensive, but you may be able to have them as part of a clinical trial.

Side effects – These vary depending on the targeted therapy used, but may include fevers, sensitivity to the sun, rashes, headaches, diarrhoea,  bleeding and bruising, and blood pressure changes.

Download our fact sheet ‘Understanding Targeted Therapy’

This is a type of drug treatment that uses the body’s own immune system to fight cancer cells. Different types of immunotherapy work in different ways. The most commonly used drugs are called checkpoint inhibitors. These drugs help the immune system to bypass “checkpoints” set up by the cancer that block the immune system. They often need to be taken for a long period of time.

Checkpoint inhibitors are currently available in Australia for some types of cancer. They have worked well for some people, but they don’t help everyone and it can be difficult to predict whether they will work in certain situations. However, new immunotherapy drugs are being developed all the time – talk to your doctor about whether any are suitable for you.

Side effects – Immunotherapy can cause inflammation in different parts of the body, for example, in the lungs (causing shortness of breath), bowel (causing diarrhoea) or thyroid gland (leading to abnormal thyroid hormone levels). Skin inflammation or rashes are more common. Unlike chemotherapy, side effects of immunotherapy need to be reported to your doctor as they may become serious.

Download our fact sheet ‘Understanding Immunotherapy’

Surgery may not be able to remove all cancer cells, but may be used to:

• remove tumours from affected areas, such as the bowel or lymph nodes
• relieve pain and discomfort caused by tumours that stop organs working properly or are pressing on nerves
• improve outcomes from chemotherapy and radiation therapy by reducing tumour size
• insert a thin, hollow tube (stent) into a blocked organ to create a passage for substances to pass through.

Download our booklet ‘Understanding Surgery’

Also known as radiotherapy, radiation therapy uses a controlled dose of radiation, such as x-rays, to kill cancer cells or damage them so they cannot grow, multiply or spread. It can be precisely targeted at cancer sites in your body. Treatment is carefully planned to have the greatest effect on the cancer cells and limit damage to healthy body tissues.

Radiation therapy can often shrink tumours or stop them from spreading further. It can also relieve some symptoms, such as bleeding from the tumour or pain from secondary cancer in the bones. Different types of external beam radiation therapy and sometimes internal radiation therapy (brachytherapy) are used depending on the location of the cancer.

Side effects – Common side effects include fatigue, skin problems and loss of appetite. These may be temporary or longer lasting. Side effects from radiation depend on the area being treated. For example, skin reactions over the area or tummy upset after radiation to the abdomen. For most people, there is some level of fatigue when having radiation treatment and this may be something to consider.

Download our booklet ‘Understanding Radiation Therapy’

Many people fear hearing the words palliative care because they think it is just for people who are dying, but it’s not. Palliative care is useful at all  stages of advanced cancer, and involves a range of services that can help with lots of things like pain management or getting around more easily.

What is palliative care?

Palliative care is person-centred care that helps people with a progressive life-limiting illness to live as fully and as comfortably as possible. Palliative care can link you with support. For example, you may need help to move around your home more safely. The main goal is to maintain your quality of life by identifying and meeting your physical, emotional, cultural, social and spiritual needs. Palliative care also provides support to families and carers.

Who is in a palliative care team?

Your palliative care may be led by your GP or community nurse, or by the specialist palliative care team in your area. The team may include doctors, nurses, social workers, physiotherapists, occupational therapists, and spiritual care practitioners. They may also link you to a counsellor, psychologist or other health professionals.

Where is palliative care usually given?

The palliative care team will help you work out the best place for your care. This may be at home supported by community palliative care services, in hospital, at a residential aged care facility or in a palliative care unit (hospice). Many services – including things like pain relief – are now available to you at home.

How can palliative care help?

Palliative care involves a range of services that will be tailored to your individual needs. There are various ways it can help, including:

• relief of pain, breathlessness, nausea and other symptoms
• help organising equipment for home (e.g. wheelchairs, special beds)
• links to other services such as home help and financial support
• counselling, grief and bereavement support
• referrals to respite care services
• volunteer services trained in palliative care.

When can I start?

Depending on your needs, you may use palliative care services occasionally or continuously, for a few weeks or months. The number of people  receiving palliative care for several years is increasing. Contacting the palliative care team early means that you can find out what the different team members do and see which services might be useful now or in the future. This will vary according to how you feel, what problems you have, and how your carers are managing.

Where to find out more

For information about palliative care and how it may be able to help you, visit Palliative Care Australia. To find a palliative care service in your local area, search the online directory – or you could speak to your doctor or nurse.

Download our booklet ‘Understanding Palliative Care’

It’s common to wonder whether there are any other therapies you could try. You may want help managing the symptoms and side effects of  conventional cancer treatment, such as fatigue, nausea or pain. Some people use therapies to help feel some control over their treatment.

What are complementary therapies?

Complementary therapies are treatments used alongside conventional cancer treatments, such as chemotherapy or radiation therapy, to improve general health and wellbeing. Check with your doctor if you are unsure about a particular complementary therapy.

Research has shown that some complementary therapies can help people manage the various emotional and physical effects of cancer and its treatment. Examples include:

• anxiety – meditation, relaxation, mindfulness, counselling, support groups, art therapy, music therapy, massage, hypnotherapy
• fatigue – meditation, relaxation, exercise
• pain – hypnotherapy, acupuncture, visualisation, massage, reflexology, acupressure, meditation, relaxation
• stress – meditation, relaxation, counselling, support groups, spiritual practices
• nausea and vomiting – acupuncture, hypnotherapy.

Cancer treatment centres and palliative care services may offer free therapies (e.g. art therapy, massage, meditation). Some community centres offer group therapies, such as tai chi or yoga, for free or for a small charge. Often you will see a private practitioner and pay for most complementary therapies. If you have private health insurance, check if it provides a rebate for visits to a private practitioner.

Download our booklet ‘Understanding Complementary Therapies’

Alternative therapies

Alternative therapies are commonly defined as treatments used instead of conventional medicine. Many alternative therapies have not been
scientifically tested, so there is no proof they stop cancer growing or spreading. Others have been tested and shown not to work.

When cancer has spread and treatment options are limited, some people consider alternative therapies. Friends and family may also suggest that you try alternative treatments. While side effects of alternative therapies are not always known, some can be harmful – for example, taking high-dose vitamins can have side effects, and eliminating food groups could mean that your diet no longer provides all the nutrients you need. Some alternative therapies may be expensive, and they could affect management of your symptoms.

Be suspicious if any treatment:

• claims to cure all cancers
• requires you to travel overseas
• says the medical/pharmaceutical industry wants to stop its use
• suggests it has positive results with few or no side effects.

Cancer Council does not recommend the use of alternative therapies as a treatment for cancer. The Australian Competition and Consumer Commission tracks health and medical scams to help the public detect and avoid scams. To find out more, visit Scamwatch.

Let your doctor and pharmacist know if you plan to use any complementary or alternative therapies to make sure they do not result in harmful side effects or interfere with other medicines you are taking.

Getting enough sleep can help keep up your energy levels and improve your mood. Difficulty sleeping may be caused by pain, breathlessness, anxiety or depression. Some medicines, hormonal changes and nausea can also affect sleep. If you already had sleep problems before the cancer spread,  these can become worse. Talk to your doctor about whether your medicines need adjusting or sleep medicines may be an option.

Ways to improve sleep

• Try some gentle activity each day. A physiotherapist or exercise physiologist can plan an exercise program, and an occupational therapist can suggest equipment to move safely.
• Avoid drinking alcohol, having caffeine, smoking, and eating spicy food.
• Try not to use your TV, computer or smartphone before bed as the blue light may tell your body it’s time to wake up.
• Follow a regular bedtime routine and set up a calm sleeping environment.
• Keep the room dark, quiet and at a comfortable temperature.
• Relax with gentle music, rain sounds or Cancer Council’s Finding Calm During Cancer podcast before bed.
• If you can’t sleep, get up and sit on the couch until you feel sleepy again.

Listen to our podcast episode ‘Sleep and Cancer’

Cancer treatments like chemotherapy or radiation therapy, and drugs for pain, antidepressants and sedatives, can cause fatigue (tiredness). The cancer, infections or anaemia (low red blood cells) can also cause fatigue, as may loss of weight and muscle tone, insomnia and anxiety or depression. Tell your doctor or nurse if you feel weaker or more tired as there may be ways to help. For example, if you have anaemia, it can be managed with medicines. An occupational therapist can give you equipment to make tasks easier and show you how to save your energy.

Tips to help with fatigue

• Plan activities for when you feel less tired, and include rest breaks.
• Do regular gentle activities, like walking to the letterbox, doing stretches or getting out of bed for meals.
• Avoid stress where possible – relaxation techniques or meditation can help. Listen to the relaxation and meditation recordings in our Finding Calm During Cancer podcast series.
• Have short naps rather than one long rest during the day.
• Alcohol can cause tiredness and energy loss, so consider whether you want to drink.
• Use Meals on Wheels or other home delivery meal companies or buy frozen or ready-to-eat meals.
• Delegate some tasks or speak to an occupational therapist about equipment to assist with activities (e.g. a shower chair, a commode).
• Apply for a disability parking sticker to reduce how far you need to walk when going to the hospital or shops.
• Limit visitors if you find they are tiring you.
• Prioritise important activities or those that you feel enrich your wellbeing.

Download our fact sheet ‘Fatigue and Cancer’

Many people with advanced cancer worry they will be in pain, but not everyone has pain. Those who do have pain may not be in pain all the time – it may come and go. The pain may be caused by the cancer itself or by cancer treatment. For example, the tumour may be blocking an organ or pressing on organs, nerves or bone.

If you do experience pain, it can usually be controlled. Pain management is a specialised field, and palliative care teams are trained in finding you the right medicine, dosage and way to take it.

There are many ways to relieve pain, including:

• pain medicines
• pain-relieving procedures for nerve pain
• complementary therapies such as massage, meditation, relaxation, acupuncture or hypnotherapy
• chemotherapy, radiation therapy or surgery.

Everyone experiences pain differently, so it may take time to find the pain relief or combination of treatments that work best for you. Using a pain scale or pain diary can help you describe your pain and how it is affecting you. This will assist your pain specialists to work out the best way to control the pain.

How and where the pain is felt and how it affects your life can change. Regular reviews by pain management experts can usually keep the pain under control. It’s better to take medicine regularly as prescribed, rather than waiting for the pain to build up. This is called staying on top of the pain. Your doctor will give you instructions on when to take your medicine. Controlling the pain may allow you to continue with activities you enjoy for some time and offer a better quality of life.

Types of pain medicines

Medicines that relieve pain are called analgesics (also known as pain medicines, pain relievers and painkillers). Some people worry about becoming addicted to pain medicines, but this is unlikely when they are taken palliatively.

Your health care team will monitor you to avoid potential side effects, such as constipation or drowsiness, which can usually be managed.

Depending on the type of pain and how intense it is, you may be offered:

• mild pain medicines, such as paracetamol or non-steroidal anti-inflammatory drugs (NSAIDs)
• moderate pain medicine, such as codeine
• strong pain medicine, such as the opioids morphine, hydromorphone, oxycodone and fentanyl.

Other ways to control pain

Surgery may help to remove or reduce a tumour, or treat blockages causing pain. Chemotherapy may shrink or slow the growth of a tumour. And radiation therapy may also shrink a tumour, and can help relieve pain if cancer has spread to the brain, bones or other organs.

You may have other types of medicine – for example, antidepressants and anticonvulsants for nerve pain; anti-anxiety drugs for muscle spasms; or local anaesthetics for nerve pain.

If the pain is hard to control, a pain specialist may consider a nerve block. The type of nerve block you are offered will vary depending on the type of cancer. Delivering pain medicine directly into the nerves in the spine via a tube (epidural) usually gives short-term relief. Most medicine that can be given by injection can also be connected to a pump.

Download our booklet ‘Understanding Cancer Pain’

People with advanced cancer often have problems with feeling sick (nausea) or being sick (vomiting). These can be caused by treatment with chemotherapy or radiation therapy, cancer growth, blockage in the bowel or the location of the cancer. Nausea can usually be managed with medicines. 

Many people talk about anticipatory nausea, the response your body learns when you know it is chemotherapy time again. Even if you are no longer having chemotherapy, you may still feel a surge of nausea if you are reminded about chemotherapy – for example, if you go past the place where you were treated or eat a food you ate during that time.

Blockage in the bowel – Sometimes cancer in the abdominal area or near the bowel can cause the bowel to become blocked. This is called bowel obstruction. Because waste matter (faeces or poo) cannot pass through the bowel easily, symptoms may include feeling sick or vomiting. To relieve these symptoms, you may have a small, hollow tube (stent) put in that helps keep the bowel open. The stent is inserted through the rectum using a flexible tube called an endoscope. If you have any symptoms that you may have a possible bowel obstruction, seek medical help urgently, don’t wait for it to get better.

Tips for when you’re feeling sick

• Eat small meals or have some snacks 5–6 times throughout the day. While you might not feel like eating, going without food for long periods can  make nausea worse.
• Choose cold foods or foods at room temperature, such as sandwiches, salads, stewed fruit or jelly.
• Have some foods or drinks that contain ginger, such as ginger ale, ginger tea or ginger biscuits.
• Take any anti-nausea medicines as prescribed. Let the doctor know if the medicines don’t seem to be working as there may be other options you could try.
• Avoid fried, greasy or spicy foods or those that have strong smells.
• Try to reduce stress with meditation. Cancer Council has relaxation and meditation recordings in the Finding Calm During Cancer podcast series.

High levels of calcium in the blood – Feeling nauseous may be a symptom of high levels of calcium in your blood (hypercalcaemia). If the cancer spreads to the bones, the cancer cells make the bone break down and release calcium into the blood. This can cause you to feel tired, thirsty and confused. Hypercalcaemia is more common in some types of advanced cancer. Drinking more water can sometimes help. You may also be given drugs to lower your calcium levels. These are called bisphosphonates, which are usually given through a drip into a vein.

Increased pressure in the brain – Cancer in the brain can also be a cause of nausea. You will usually be given steroids to reduce swelling around the tumour.

People with advanced cancer often notice changes in their appetite. This may be because of the cancer itself, treatment, or other side effects such as tiredness, nausea or vomiting, taste changes, pain, lack of activity, or depression.

A loss of appetite often leads to weight loss and malnutrition. Eating is important to help you maintain your strength, function and quality of life. However, it’s not necessary to force yourself to eat; this may only make you feel uncomfortable and cause vomiting and stomach pain.

Food-type nutritional supplements can increase nutrient intake. These are used as snacks between meals. Many pharmacies and supermarkets sell these specially formulated nutritional supplements. You do not need a prescription, though it may be cheaper if you have one from a doctor or dietitian. Your health care team may suggest a brand to try.

People with advanced cancer may develop a muscle-wasting syndrome known as cachexia. This means the body isn’t using protein, carbohydrates and fats properly. Your doctor or dietitian will discuss ways to manage cachexia, which may include nutritional supplements or medicines such as appetite stimulants. 

Ways to help improve appetite

• Good nutrition can improve quality of life, but if you’re not feeling hungry then it’s okay to focus on eating foods that you enjoy to help stimulate your appetite.
• Eat what you feel like, when you feel like it. Don’t worry so much about timing or set meal times. You could have something lighter like cereal for dinner or a main meal at lunch.
• Use a smaller plate – a big plate full of food may put you off eating.
• Relax dietary restrictions. With advanced cancer, maintaining your weight is more important than avoiding full-fat foods like whole milk or yoghurt.
• Add flavour to foods with lemon or lime juice, fresh or dried herbs and spices.
• Add ice-cream or cream to some fruit or into a smoothie to increase kilojoules and nutrients.
• Try soft foods or clear liquids, which are easier to digest.
• Sip on juice, cordials, smoothies, soft drinks and sports drinks during the day to help keep you hydrated.
• Make meals as enjoyable as possible, e.g. play music, light candles or eat dinner with family or friends.
• Gentle physical activity can stimulate appetite. You could try taking a short walk around the block or some easy exercises.
• Speak to your doctor about trying some medicines that could help improve your appetite.
• See a dietitian for information about nutritional supplements, such as protein shakes, to ensure you don’t lose too much weight.

Download our booklet ‘Nutrition for People Living with Cancer’

People with advanced cancer often experience shortness of breath or breathlessness. This may sometimes be called dyspnoea. Breathlessness can happen for many different reasons, including:

• fluid surrounding or in the lungs
• an infection
• the cancer itself
• scarring from radiation therapy
• pressure from a swollen abdomen
• anaemia (low red blood cell levels)
• underlying chronic breathing disorders, such as asthma or emphysema
• heart problems
• anxiety
• general weakness.

Symptoms of breathlessness include difficulty catching your breath, noisy breathing or very fast, shallow breaths. Although breathlessness can make you feel distressed and anxious, there are ways to prevent or reduce its impact on your quality of life.

Treatment will depend on the cause of the breathlessness. You may need to have any fluid around the lungs drained, or medicine prescribed to treat an infection or other lung problem. If breathlessness is caused by the lungs not supplying enough oxygen to your blood, your doctor may be able to arrange a portable oxygen cylinder.

Ask your doctor or nurse about medicines, such as a low dose of morphine, to manage the distress of breathlessness. 

Ways to manage breathlessness

Create a breeze – Use a handheld fan to direct a stream of air across your face if you feel short of breath. Or you could open and sit near a window to increase airflow.

Lean on a pillow – Sit up or lean forward on a table with an arm crossed over a pillow to allow your breathing muscles to relax. You can also use a walking frame when out or lean on the shopping trolley at the supermarket, as this position can ease your breathing.

Keep up your fluid intake – It’s important to make sure you drink plenty of fluids throughout the day. Being dehydrated can make you feel more breathless.

Take time to sit down – Spread out activities during the day or break them up into smaller tasks. Place chairs around the house so that you can sit down between activities or when moving from room to room.

Try relaxation programs – Listen to a relaxation recording or learn ways to relax. Cancer Council has relaxation and meditation recordings available as podcasts. Some people also find breathing exercises, acupuncture and meditation helpful.

There are many different types of costs that can add up during diagnosis and treatment. If you are concerned about money, this can add to the worry and stress of being diagnosed with advanced cancer.

Ask your doctor whether there are ways to reduce your treatment costs. They can also refer you to a social worker for advice. Depending on your circumstances, you may need to consider ways to manage the financial impact of advanced cancer.

Making payment arrangements

If you are having difficulty paying your utility bills, such as electricity, gas, water, phone or internet, contact your provider. You may be able to access flexible payment arrangements, discounts, rebates or concessions through their hardship program. Check with the hospital social worker whether other options are available in your state or territory. You can visit the National Debt Helpline or call them on 1800 007 007 for free financial counselling and advice.

Keeping paperwork up to date and in one secure place will make it easier if someone needs to help you with money or legal matters. Discuss your legal arrangements with your family, and let them know how to contact your lawyer. If you have an Advance Care Directive, give a copy to your health care team so they know about any decisions you have made.

Documents to get together include:

• social media login and passwords
• birth, marriage/divorce certificates
• bank and credit card details and passwords
• investment information (e.g. shares)
• Centrelink and Medicare details
• superannuation and insurance
• house title/lease
• loan details (e.g. house, car)
• passport
• will
• documents appointing substitute decision-maker/power of attorney
• Advance Care Directive
• funeral information

In Australia, you can access your superannuation (super) if you are 65 years old or if you have retired (depending on your age). You can also apply to access your super early in particular circumstances including:

• on compassionate grounds, including to pay for medical treatment
• if you are facing severe financial hardship
• if you are diagnosed with a life-limiting illness – you may need to provide supporting documentation, which your doctor can arrange.

You can apply to access your super early through your super fund or the Australian Taxation Office (ATO).

Cancer Council’s Legal and Financial Referral Service may be able to connect you with a professional who can help Call 13 11 20 for more information.

Check your insurance

People often don’t realise that they may have insurance attached to their superannuation. Many super funds may offer insurance by default – so you will be covered as long as you did not choose to opt out.

Types of insurance provided through super funds can include income protection, total and permanent disability, and life insurance (may be called death cover).

To find out whether you have insurance through your super or how accessing your super early will affect your insurance entitlements, talk to your super fund and insurer, or to a financial planner.

It can be a good idea to take some time to plan for your future medical treatment and care, and to discuss your preferences and values with your family, friends and health care team. This process of discussing future care and preparing any necessary documents is called advance care planning. It ensures that your family and health care team know and respect your treatment wishes if you can’t make decisions for yourself (also called losing decision-making capacity) or if you are unable to communicate your wishes for any reason. As well as giving you peace of mind, studies show that families of people who have done advance care planning feel less anxiety and stress when asked to make important health decisions for them.

Advance care planning can involve:

• talking and making decisions about what is important to you for quality of life
• discussing what treatments you may or may not want, including where you want to receive care (e.g. at home if possible)
• completing an Advance Care Directive
• appointing a substitute decision-maker.

Advance care planning may be confronting, but it doesn’t mean that you have given up or will die soon – the process gives you the security to know that you have formalised plans for the future, and that you can now focus on treatment and living.

Any advance care planning documents you make can be as simple or as detailed as you like. If you have religious, spiritual or cultural beliefs that may affect your health care decisions, you can record these in your advance care planning documents.

In all States and Territories except the ACT, Advance Care Directives are only used if there comes a time when you can’t make decisions for yourself.  You need to be able to make clear decisions (have capacity) to complete an Advance Care Directive, as it is a legal document.

You can change an Advance Care Directive at any time.

To find out more, visit Advance Care Planning Australia or call 1300 208 582.  You can also get independent legal advice. Call Cancer Council on 13 11 20 if you feel anxious about planning.

Steps in advance care planning

Talk to others
Use one of the following guides to help you think about your preferences and discuss them with family and friends:

• Advance Care Planning Australia’s conversation starters
• Palliative Care Australia’s discussion starter

It may also be helpful to talk to your doctor about the kinds of choices that may need to be made in the future.

Record your treatment goals
Many hospitals have their own forms for you to use. If not, you can find information relevant to your state or territory at Advance Care Planning Australia. Documents must include:

• names and contact details of your substitute decision-maker
• outline of treatments, care or services that you do or do not want
• a signature and date for both you and your witness.

Make copies

• Share copies of your advance care documents with your GP, oncologist, palliative care team, substitute decision-maker, hospital and family or friends.
• Ask your doctor or hospital to include the plan in your medical record.
• Save it online to your My Health Record.
• Review the documents regularly – yearly is a good idea- and update them whenever your wishes change.

If you have not already done so, now is the time to think about appointing a substitute decision-maker, preparing an Advance Care Directive and making a will. For any of these documents to be legally binding, you need to have decision-making capacity at the time of making the document. In general, having capacity means you are able to understand the choices that are available and the consequences of your decisions, and that you can communicate these choices. For more information, talk to your doctor or a lawyer. Each state and territory has different laws about what having capacity officially means, making Advance Care Directives and appointing substitute decision-makers.

Making an Advance Care Directive

The written record of your goals, values and treatment preferences, and instructions for any future medical care is called an Advance Care Directive. It is legally binding and used by your doctors, family and carers if they need to make decisions on your behalf.

Depending on where you live, this document may also be known as an Advance Health Directive, Health Direction or an Advance Personal Plan. You can download and save, or print out the form specific for your state or territory from Advance Care Planning Australia. You may need the help of your doctor or lawyer to complete the form and make sure it’s signed, dated and witnessed. Some hospitals use their own forms.

If your needs change, you can choose to revise or replace your Advance Care Directive. Ask your doctor or hospital to add your Directive to your medical record. You can also save it online at My Health Record. For more information, see Advance Care Planning Australia.

Appointing a substitute decision-maker

You can appoint someone to make legal, financial and/or medical decisions on your behalf, if you lose capacity to make these decisions yourself. This person is called a substitute decision-maker. Your substitute decision-maker should be someone you trust and who understands your values and what you want for any future care. They do not necessarily have to be a family member. Depending on where you live, different documents are required to appoint a substitute decision-maker.

If you cannot make decisions for yourself (lose capacity), and do not have an Advance Care Directive or an appointed substitute decision-maker, the law in each state and territory outlines who may make medical treatment decisions for you. This is usually someone close to you, such as your spouse or partner, family member or close friend. For more information about who may make treatment decisions for you, visit End of Life Law in Australia.

Making a will

A will is a legal document that sets out what you want to happen to your assets after you die. These assets are called your estate and may include your house, land, car, bank accounts, jewellery, clothes, household goods or investments. A will can also record your wishes regarding guardianship plans for any children.

Making a will is not difficult but it needs to be prepared and written in the right way to be legally valid. A will should be reviewed and updated as circumstances change. It is best to ask a lawyer to advise you, or contact the Public Trustee in your state or territory.

Cancer Council may be able to connect you with a lawyer to help you prepare a will. For more information, call 13 11 20.

If you die without a will, you are said to die intestate. Your assets – such as your house, money and belongings – are distributed to family members according to a formula provided by law. Although any will can be challenged in court, having a valid will usually means that your assets will go to the people of your choice, avoids extra expenses, and simplifies the process for your family.

Voluntary assisted dying

Voluntary assisted dying (VAD) is when a person with an incurable, life-limiting condition or illness chooses to end their life with the assistance of a doctor or health practitioner – using specially prescribed medicines from a doctor. “Voluntary” means that it is the choice of the unwell person to end their life.

When this information was last reviewed (May 2024), laws around VAD have commenced in all Australian states. VAD remains unlawful in the Northern Territory and Australian Capital Territory at the time of last review (May 2024).

Voluntary assisted dying is only available to people who meet all the strict conditions and follow certain steps as required by the laws in their state. It is essential to check the latest updates and know the law and rules around making this choice. Laws and rules around VAD may be different in the state or territory where you live.

For information and updates on VAD for your state or territory, visit Queensland University of Technology’s End of Life Law in Australia.

The laws in the Northern Territory and ACT were under review at our last review (May 2024).

Making a funeral plan

Having advanced cancer can mean thinking about things you might not have thought about otherwise – like making a will or even how you would want your life to be celebrated. Some people may want to think about what they want for their funeral, while others may not.

If you want to plan your funeral, you could discuss your wishes with your family and friends, lodge a plan with the funeral director of your choice or record your wishes in your will. The executor is the name for the person you appoint to carry out the wishes left in your will. They should follow the directions in your will, but they are not legally bound to do so.

You can personalise your funeral to suit your cultural or spiritual beliefs. You may have just a few simple requests for music you want played or poems you’d like read, or you may have lots of ideas for the full service. You can also choose not to have a funeral at all or to have a non-traditional event such as a celebration of life. If you change your mind, you can alter these arrangements at any time.

To prearrange or prepay a funeral, talk to a funeral director. You can download a pre-planning information form from the Australian Funeral Directors Association or Funeral Directors Australia. It’s important to let your family know of any arrangements like this that you have made. Copies of a prepaid funeral contract should be given to members of your family or filed with your will.