Living with Advanced Cancer
Managing symptoms of advanced cancer
People with advanced cancer can have a range of symptoms. The suggestions in this section may help you to find some relief.
Sleeping problems
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.
Fatigue
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.
Pain
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.
Feeling sick
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.
Loss of appetite
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’
Shortness of breath
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.
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This information was last reviewed December 2022 by the following expert content reviewers: Dr Lucy Gately, Medical Oncologist, Alfred Health and Walter and Eliza Institute for Medical Research, VIC; Dr Katherine Allsopp, Supportive and Palliative Care Specialist, Westmead Hospital, NSW; A/Prof Megan Best, The University of Notre Dame Australia and The University of Sydney, NSW; Dr Keiron Bradley, Palliative Care Consultant, Medical Director Palliative Care Program, Bethesda Health Care, WA; Craig Brewer, Consumer; Emeritus Professor Phyllis Butow, Psychologist, The University of Sydney and Chris O’Brien Lifehouse, NSW; Louise Durham, Palliative Care Nurse Practitioner Outpatients, Princess Alexandra Hospital, Metro South Palliative Care, QLD; Dr Roya Merie, Radiation Oncologist, ICON Cancer Centre, Concord, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Xanthe Sansome, Program Director, Advance Care Planning Australia, VIC; Sparke Helmore Lawyers; Peter Spolc, Consumer.