Side effects vary from person to person – you may have none or only a few. This section describes the most common symptoms and side effects experienced during treatment for CUP. You may experience others not mentioned here. Most symptoms and side effects can be relieved and some can even be prevented.
Cancer care pathways
For an overview of what to expect during all stages of your cancer care, read or download the What To Expect guide for cancer of unknown primary (also available in Arabic, Chinese, Greek, Hindi, Italian, Tagalog and Vietnamese – see details on the site). The What To Expect guide is a short guide to what is recommended for the best cancer care across Australia, from diagnosis to treatment and beyond.
Many people with CUP worry that they will be in pain. Not everyone will experience pain, and those who do may find it comes and goes. Pain depends on the location of the cancer and its size.
Ways to relieve pain include:
- pain medicines, such as paracetamol and opioids
- an injection of pain-relieving drugs into the spinal column (epidural or spinal block)
- relaxation therapies, such as massage, meditation, mindfulness meditation or hypnotherapy
- treating the cause of the pain with chemotherapy, radiation therapy or surgery.
You may need to use more than one method to relieve pain. It may take time to find the right pain-control measure for you. If one method doesn't work, you can try something else.
Treatments used to relieve pain
Chemotherapy, radiation therapy and surgery are common cancer treatments. They may also be used as palliative treatment to reduce pain, even though they may not be able to treat the CUP itself.
This treatment can shrink the size of a tumour that is pressing on nerves or organs and causing pain.
This can relieve some types of pain. Different types of radiation therapy may be used. The radioactive form of the metal strontium is sometimes used when the cancer has spread to many places in the bone – the drug is injected and settles in the bones near the cancer.
Surgery may be used to remove an isolated tumour; to treat a serious condition like a bowel blockage (obstruction) that is causing pain; or to reduce the size of the cancer and improve the effectiveness of chemotherapy and radiation therapy.
Pain management experts
Your GP or oncologist may be able to suggest effective medicine for your pain, but if you are still uncomfortable, ask to see a palliative care specialist. Good pain control is one of the major contributions that a specialist palliative care team can make for someone whose pain is difficult to manage.
How and where the pain is felt, and how it affects your life, may change. Regular check-ups with pain management experts can help keep the pain under control. It's better to take your pain medicine regularly, rather than waiting for the pain to occur.
For more information, see Overcoming Cancer Pain or call Cancer Council 13 11 20.
Feeling sick in the stomach (nauseated) is an unpleasant symptom that may be caused by the cancer itself. Other causes include:
- treatment with chemotherapy or radiation therapy
- stress or anxiety
- too much or too little mineral in the blood, e.g. calcium
- drugs used to control other symptoms, e.g. morphine given for pain
- the kidneys not working properly
- an oral thrush infection, sometimes related to chemotherapy
- a bowel blockage (obstruction)
- increased pressure around the brain as a result of cancer
- in the brain or cancer affecting the fluid around the spinal cord (cerebrospinal fluid).
Tips for easing nausea
- Eat small meals as often as you can.
- Eat cold foods, such as sandwiches, salads, stewed fruit or jelly.
- Use stress-reduction techniques such as meditation or relaxation.
- Talk to your doctor or nurse about anti-nausea drugs.
- Avoid strong odours and cooking smells.
- Have food or drink with ginger, e.g. ginger ale, ginger tea or ginger cake.
- Call Cancer Council 13 11 20 for more information on dealing with nausea and lack of appetite, or listen to The Thing About Cancer podcast episode on appetite loss and nausea.
Lack of appetite
Lack of appetite is a common problem faced by people with CUP. Some people don't feel like eating because of stress from the diagnosis and treatment. The treatment may also change the way food tastes or smells. You might also not want to eat much if you are feeling sick (nauseated) or have a sore mouth. These problems can often be treated, so let your treatment team know.
You may go through periods of having no appetite. These may last a few days or weeks, or be ongoing. During these periods, it may help to have liquid meal substitutes. These are high calorie drinks containing some of the major nutrients needed by your body. Drinking these may help keep your energy levels up during periods when your appetite is poor.
Tips for when you don't feel like eating
- Have small meals and snacks frequently.
- Use small dishes so food isn't "lost" on the plate, e.g. serve soup in a cup.
- Choose full-fat foods over low-fat, light or diet versions.
- Use lemon juice, fresh herbs, ginger, garlic or honey to add flavour to bland food.
- Sip fluids throughout the day. Add eggs, ice-cream, yoghurt or fruit to drinks to increase kilojoules.
- If you have a sore mouth, eat soft food, such as scrambled eggs or stewed fruit.
- Ask your dietitian if you can use nutrition supplements to help slow weight loss and maintain muscle strength.
Some people with CUP experience shortness or breath (breathlessness). Causes of breathlessness include:
- fluid surrounding the lungs (pleural effusion)
- an infection in the lungs
- the cancer itself
- anaemia (low levels of red blood cells)
- pressure from a swollen abdomen
- chronic breathing disorders, such as asthma or emphysema.
Treatment will depend on what is causing the breathlessness. You may need fluid drained from the chest (pleural tap) or medicine for an infection or other lung problem. A low-dose opioid medicine (also used for strong pain) is sometimes prescribed.
Tips to help your breathing
- Use a fan or open a window to get a draught of air moving near your face.
- Sit up to ease your breathing or lean forward to rest on a table. Also try sleeping in a more upright position.
- Ask someone else to breathe in time with you so you can focus on slowing your breath to their pace.
- Try relaxation or breathing techniques to see if they help. A physiotherapist can teach you these, or you can listen to a meditation or relaxation CD.
- Watch the Managing Your Breathlessness video from Lung Foundation Australia.
For many people, extreme and constant tiredness (fatigue) can be a major problem. It can be very distressing for the person experiencing it and for those around them. Some people say they find their tiredness harder to manage than their pain or nausea. Tiredness can be caused by a range of things, such as:
- the cancer itself
- cancer treatment such as chemotherapy or radiation therapy
- poor nutrition causing loss of weight and muscle tone
- lack of sleep
- drugs such as pain medicines, antidepressants and sedatives
- anaemia (low levels of red blood cells)
Tips for managing fatigue
- Pace yourself. Spread your activities throughout the day with rest periods inbetween.
- Try to do gentle exercise. Research shows this reduces tiredness and preserves muscle strength. Even walking to the letterbox or getting up for meals can help.
- Have a short nap of no more than 30 minutes during the day. This can refresh you without making it hard to sleep at night.
- Speak to an occupational therapist about ways to conserve energy.
- Call Cancer Council 13 11 20 for more information about coping with fatigue, or listen to The Thing About Cancer podcast episode on fatigue.
- Cancer and its treatment can affect the body in different ways and cause various symptoms and side effects.
- Depending on the cancer and the treatment(s) that you have, you may experience other symptoms and side effects not listed in this section. Ask your treatment team for more information.
- If you are experiencing symptoms or side effects, there are a number of ways to manage them.
- Lack of appetite is a common problem faced by people with CUP. This may last a few days or weeks or it could be ongoing. Try to increase your kilojoule intake by choosing full-fat products, adding extra ingredients to drinks, and following your cravings.
- Breathlessness may have various causes. If you become breathless, try to get a flow of air from a fan or window moving near your face. Relaxation and breathing techniques may also help.
- Pain is a common symptom for people diagnosed with CUP. It can usually be controlled with medicine, so tell your treatment team about any pain.
- Nausea can be caused by many things. Eating small meals may help. You can also talk to your treatment team about medicine or dietary changes to manage nausea.
- Fatigue can be a major issue. It may be caused by anaemia. Ways to manage the tiredness include planning your day, doing gentle exercise and taking a short nap.
- Talk to your treatment team about any symptoms or side effects that you experience.
Expert content reviewers:
A/Prof Linda Mileshkin, Medical Oncologist, Peter MacCallum Cancer Centre, VIC; Karen Hall, Clinical Nurse, Oncology/Haematology, Flinders Medical Centre, SA; Rebecca James, 13 11 20 Consultant, Cancer Council SA; Prof Chris Karapetis, Network Clinical Director (Cancer Services), Southern Adelaide Local Health Network, Head, Department of Medical Oncology, Director, Clinical Research in Medical Oncology, Senior Consultant, Southern Oncology SA, Flinders Private Hospital, Flinders Medical Centre and Flinders University, SA; Frank Stross, Consumer.