Pain

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Pain is one of the most common side effects for people with CUP.

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Patients often report that their pain comes in waves, meaning it comes and goes. Pain also depends on how large the cancer is and the location/s of the cancer in your body, as tumours pressing against and putting pressure on nerves can cause pain.

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Talk to your treating team regularly and proactively as your experience of pain will change throughout your cancer journey. It’s better to take your pain medicine regularly, rather than waiting for the pain to occur, as it will help keep the pain managed. You may need to use a combination of methods to effectively relieve your pain. It may take time and trial and error to find the right pain-control measure for you.

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Medical options for relieving pain:

• Discuss with your doctor which analgesia may be best for you.
• Pain medications such as
  • Paracetamol
  • Ibuprofen and other non-steroidal anti-inflammatory drugs
  • Opioids such as morphine or codeine can work by reducing inflammation or blocking pain receptors. 
• An injection of pain-relieving drugs into the spinal column (epidural or spinal block)
• Medicines that are normally used for chronic pain, such as antidepressants or steroids, may help relieve pain.
• Treating the cause of the pain with chemotherapy, radiation therapy and surgery 

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‍Pain management specialists

Your treating team will be able to recommend medicine or treatment to help manage your pain, but if you are still experiencing pain, you can ask for a referral to a pain management or palliative care specialist. These specialists may be able to provide additional specific support around how to best manage your pain. They will often ask how the pain feels, where it is being felt and how it is affecting your life so they will know how to best support you. Talk to your treating team regularly and proactively as your experience of pain will change throughout your cancer journey. It’s better to take your pain medicine regularly, rather than waiting for the pain to occur, as it will help manage the level of pain.

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Non medical options for relieving pain:

You might like to consider non-medical pain options to relieve cancer or treatment pains.

They can include supportive allied health services such as physiotherapy or occupational therapy.

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Some methods are simple, and can be incorporated into your daily routine, such as stretching, using ice or hot packs. Others are complementary therapies such as massage, acupuncture and yoga. These therapies are not part of standard care for cancer as some lack scientific evidence, but they sometimes can be used alongside conventional treatments. Speak to your doctor before engaging with any of these to ensure they are right for you.

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Further Information about managing your pain:

Managing Pain for Advanced Cancer | Cancer Council NSW

Managing pain | Living Well After Cancer | Cancer Council NSW

‍Non-medical ways to Manage Pain | American Cancer Society‍

Fatigue

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For many people, extreme and constant tiredness (fatigue) can be one of the most difficult symptoms to manage. It can be very distressing, both for the person experiencing it and for those around them witnessing their loved one struggling. Tiredness or lack of energy can be caused by a range of factors, such as:

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• Cancer or its treatment
• Anaemia (low level of red blood cells)
• Hypercalcaemia (high level of calcium in the blood)
• Drugs such as pain medication, antidepressants and sedatives
• Infection
• Poor nutrition causing loss of weight and muscle tone
• Anxiety or depression
• Poor quality sleep or lack of sleep
• Poorly controlled pain

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Tips for managing fatigue

• Take things slowly or at a comfortable pace. Spread your activities and/or chores throughout the day as much as you can without making it hard to sleep well at night. Ensure to take breaks in between tasks, ensuring adequate rest and recovery between periods of exerting energy.
• Gentle and moderate exercise has been shown to reduce tiredness and preserve muscle strength. Simply walking to the letterbox, getting up for meals or even sitting in the sun can help refresh you and give you energy. 
• Take a short nap during the day (only 30 minutes). Even a short sleep like this can give you more energy and make you feel refreshed, giving you energy for the next part of the day.
• Speak to an occupational therapist about ways to conserve energy. They may be able to give you practical strategies to modify the way you complete daily activities to reduce the amount of energy you need to exert.

Appetite and Nausea

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‍Lack of appetite

A decreased appetite is a common experience for individuals with CUP, often stemming from the stress associated with diagnosis and treatment. The treatment one receives may also change the way food smells or tastes, which can contribute to nausea or discomfort.

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Periods of reduced appetite can be short term (a few days or weeks) or be ongoing. When you are feeling this way, speak to your treating team as this can often be managed.

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Tips for when you don’t feel like eating

• Have smaller meals more frequently throughout the day and include healthy snacks (such as yoghurt or fruit) between mealtimes.
• Explore liquid meal substitutes, which provide you with the same amount of energy and nutrients, without having to eat. 
• Choose full-fat foods over low-fat, light or diet versions to maximise nutrients. 
• Introduce more flavour to meals by e.g., adding lemon juice, pepper, fresh herbs, chilli, ginger, salt (in moderation), garlic, sauce, or honey as ingredients in dishes.
• Maximise your intake of fluids/liquids such as water or milkshakes (to increase your energy intake).
• If you have a sore mouth, eat soft food, such as scrambled eggs or stewed/pureed fruit.
• Ask your dietitian if you can use nutrition and protein supplements to maintain weight and muscle mass.

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Nausea

Feeling nauseous (sick in the stomach) can be a symptom that is caused by cancer or a side effect from cancer treatments.

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Nausea can be caused by:

• treatments or medication for cancer or other health conditions
• stress and anxiety
• too high or too low levels of a mineral in the blood such as calcium or iron
• the kidneys not working properly
• oral thrush (mouth infection)
• bowel blockage or constipation
• increased pressure around the brain due to cancer cells in the brain or cancer cells affecting the flow of fluid around the spinal cord

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Tips for easing nausea

• Instead of regular meals, eat smaller meals as frequently as you can.
• Eating cold foods, such as sandwiches, salads, stewed fruit or jelly, may help reduce nausea. 
• Avoid strong odours and cooking smells.
• Try to include food or drink that contains ginger, such as ginger ale, ginger tea or ginger cake.
• Use stress-reduction techniques such as meditation or relaxation.
• Talk to your doctor or treating team about anti-nausea medication, or any treatments that might help relieve physical causes, such as constipation.

Breathlessness

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People with CUP can experience shortness of breath and this can be for a variety of reasons. Some causes of breathlessness include:

• fluid around the lungs (pleural effusion)
• a lung infection
• blood clot in the lung (pulmonary embolism)
• pressure from the cancer or a swollen abdomen
• anaemia (low levels of red blood cells)
• chronic respiratory conditions, such as asthma or emphysema.

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Treatment will be dependent on the cause of breathlessness. You may need a small procedure called a pleural tap to drain fluid from the chest or an ascitic tap to drain fluid from the abdomen. 

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Tips to help your breathing

• Use a fan or open a window to get a draught of air moving near your face. A battery-operated handheld fan may be helpful.
• Try sitting up straight or leaning forward to rest on a table to ease your breathing. You can also try sleeping in a more upright position. 
• Relaxation or breathing techniques might be able to help. You can talk to a physiotherapist who can teach you these techniques, or listen to a meditation or relaxation recording.
• Your doctor may prescribe you with medication to help you breathe, or introduce you to supplemental oxygen (an oxygen tank that you carry around with you).

Lymphoedema

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Patients may experience lymphoedema due to a blockage in the lymphatic system which prevents fluid in that area from draining properly and leading to a buildup of fluid. Lymphoedema is characterised by swelling, typically in the arms or legs but it can be in other parts of the body too.

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The main causes of lymphoedema are:

• Removal of lymph nodes during cancer surgery
• Inflammation and scarring in lymphatic tissues (leading to blockages) as a result of radiation therapy
• The location of tumours putting pressure on lymph nodes, preventing the flow of fluid

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Practical strategies for managing lymphoedema focus on reducing swelling and improving drainage fluid.

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Tips to help with lymphoedema

• Wearing garments such as compression socks can help apply pressure to your limbs, reducing swelling and encouraging fluid circulation. This can be called compression therapy, and you can speak to your doctor (or physiotherapist / lymphoedema therapist) if you think it might be beneficial for you. 
• In some cases, a specialised massage called manual lymphatic drainage (MLD) may be used to stimulate circulation of fluid through your lymphatic system to reduce swelling. 
• Exercise and weight management can reduce the strain on your lymphatic system and encourage circulation of blood throughout your body.
• Stay cool in hot weather as the heat can make the swelling worse. Try and take colder showers, drink plenty of water, avoid getting sunburnt and stay inside on the hottest parts of the day.