- Difficulty sleeping
- Loss of appetite and weight loss
- Managing pain with medicines, radiotherapy and chemotherapy
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For many people pleural mesothelioma is diagnosed at an advanced stage. The main goal of treatment is to manage the symptoms and keep them under control for as long as possible.
Although there is no cure for pleural mesothelioma treatment may make you feel better and help you live longer. This is called palliative treatment.
This article describes different ways of managing symptoms. You may have a combination of these treatments. If the symptoms return after a period of wellness you may be offered a different combination of treatments.
Breathlessness is the most common symptom of pleural mesothelioma. In the early stages of pleural mesothelioma, controlling the pleural fluid build-up around the lungs and having surgery will improve breathlessness. The level of improvement will depend on how healthy your lungs were before you developed pleural mesothelioma and the level of lung function after surgery.
During the process of diagnosing pleural mesothelioma, fluid build-up will have been drained off, and further accumulation of fluid may be prevented by pleurodesis.
Although living with breathlessness can be difficult and can cause distress, there are surgical and non-surgical ways to prevent or reduce its impact on your life.
Improving breathlessness with surgery
Video-assisted thoracoscopic surgery (VATS) and talc pleurodesis
If you were diagnosed with pleural mesothelioma after a CT-guided core biopsy and the symptoms of breathlessness remain, your surgeon may suggest you have VATS.
During VATS some of the lining of the chest wall and lung will be removed (pulmonary decortication) and some sterile talcum powder will be injected into the pleural cavity (talc pleurodesis). This causes inflammation that closes the pleural cavity and prevents fluid from building up again. In most cases this procedure improves your ability to breathe.
Open surgery (thoracotomy, pleurectomy and pulmonary decortication)
Following VATS and talc pleurodesis, the fluid build-up around the lungs may come back, making you feel breathless again. The surgeon may suggest more extensive surgery called thoracotomy with pleurectomy and pulmonary decortications. In rare cases if you are experiencing pain in the chest, the surgeon may suggest open surgery to relieve the pain.
Under a general anaesthetic the surgeon will open the chest by making a cut from the back to the side of the chest and between the ribs. The pleural fluid is drained and the part of the pleura most affected with cancer is removed. After this procedure the lung is inflated by the anaesthetists and the chest is closed. Chest tubes are left in place for at least 48 hours to drain blood and any air that is leaking from the peeled lung surface. This type of surgery controls recurring pleural effusion in most cases.
Pain after open surgery can last longer than after VATS but the improvement in symptoms and lung function may make this worthwhile if VATS has been unsuccessful.
Indwelling pleural drain
An indwelling pleural drain may be offered to people who are too unwell for VATS or open surgery. It can also be used if the pleural fluid builds up again after pleurodesis.
The surgeon or interventional radiologist inserts a thin tube (catheter) through the chest wall into the pleural cavity. The pleural drain is connected to a bottle to drain off fluid and help your breathing. You may have to drain the fluid one to two times a week depending on how quickly it builds up again. You can manage the drain at home with the help of a community nurse. Your family or a friend can also be taught how to do this.
Sometimes with an indwelling pleural drain the pleural cavity may close up over time and stop producing fluid. If this occurs the drain will be removed.
Improving breathlessness without surgery
- Let your doctor know if you feel breathless. Other conditions such as anaemia, a lung infection or a heart related issue, may make you feel short of breath and these may be able to be treated.
- Use a fan or medical gas to direct a cool stream of air across your face if you feel breathless when you are not exerting yourself.
- Talk to your doctor about medicines, such as a low dose of morphine, to manage feelings of distress.
- Listen to a relaxation CD or learn other ways to relax. This can help you control anxiety and breathe more easily.
- Lean forward on a table with an arm crossed over a pillow to allow your breathing muscles to relax.
- Use a recliner chair to help you sleep in a more upright position.
- Ask your health care team for assistance obtaining any equipment that may help.
If your breathlessness is caused by the lungs not supplying enough oxygen to your blood, your doctors can arrange for you to receive an oxygen concentrator. This device delivers oxygen to your lungs and can be used at home. You can use a portable oxygen cylinder for outings and appointments.
Getting a good night’s sleep is important for maintaining energy levels and reducing fatigue. Difficulty sleeping may be due to pain, breathlessness, anxiety or depression.
Talk to your doctor about what might be helpful for you and whether medication may be an option. You may want to limit use of technology, such as television or computers, before bed and set up a calm sleeping environment.
Fatigue means feeling very tired and lacking energy to carry out day-to-day activities. Fatigue for people with cancer is different from tiredness. It does not usually go away with rest or sleep.
If fatigue continues for long periods of time, you may lose interest in things you usually enjoy doing or feel unable to concentrate on one thing for very long. Fatigue can influence how you feel about yourself and others which may affect your close relationships.
If fatigue is a problem talk to your treatment team. Sometimes fatigue can be caused by a low red blood cell count or the side effects of drugs, and can be treated. While you cannot always get rid of fatigue you can find ways of managing it and boosting your energy levels.
- Set small, manageable goals for the day and rest before you get too tired.
- Ask for and accept offers of help with tasks such as shopping, cleaning and gardening.
- Plan ahead. For example, set your clothes out before you shower or bathe to avoid walking back and forth to your wardrobe.
- Leave plenty of time to get to appointments.
- Sit down whenever you can.
- Say no to things you really don’t feel like doing.
- Seek your doctor’s approval to exercise. Even a walk around the garden or block can boost your energy levels.
- Eat nutritious food to keep your energy levels up.
For many people, losing weight and interest in eating are common, even before pleural mesothelioma is diagnosed. Weight loss may be caused by nausea, difficulty swallowing, breathlessness, changes in taste or smell, or feeling down.
Maintaining good nutrition will help you cope better with day-to-day living, treatment and side effects, and improve your quality of life. You may find it useful to talk to a dietitian who is experienced in treating people with cancer. They can provide helpful eating suggestions.
Managing changes in appetite
- Eat small meals and snacks regularly.
- Use a small plate or bowl so the plate looks fuller.
- Eat soft, moist food e.g. casseroles with gravy, scrambled eggs, bananas, mashed potatoes and other well cooked soft vegetables.
- Add ice-cream or fruit to a drink to increase calories and nutrients.
- Drink from a ‘half-full’ glass. It is more satisfying to empty a half-full glass than only half finish a full glass.
- If solid food doesn’t appeal to you ask your dietitian about commercially prepared nutritional supplements.
- Use lemon juice and herbs to add flavour to bland food.
- Try eating salads or cold foods if hot food smells make you feel nauseous.
- Avoid fatty foods or heavy, sugary foods if they make you feel sick.
- Eat more of your favourite foods – follow your impulse.
Pain medicines may be mild, like aspirin or paracetamol; moderate, like codeine; or strong opioid-based, like morphine. Pain-relieving drugs may be taken as tablets, other oral mixtures, patches, injections and intravenous infusions. Other drugs may also be prescribed, like non-steroidal anti-inflammatory drugs (NSAIDs) or drugs specifically for nerve pain.
To help find the right medicine for you your doctor may prescribe different drugs, different doses or a combination of drugs. Pain can usually be relieved with the right medicine.
Opioids, such as morphine, are the most common drugs used to control moderate to severe cancer pain. Morphine is available in quick-acting and long-acting forms. Some people feel concerned about taking morphine, thinking they will become addicted. However pain specialists believe a person does not become addicted to morphine if they are taking it as prescribed, to relieve pain. Morphine can be taken for a long time and in increasing doses if needed. It doesn’t have to be kept for ‘when the pain gets really bad’.
Radiotherapy is used when pleural mesothelioma spreads, or presses on specific body parts like nerves, bones or major blood vessels, causing pain.Chemotherapy is used to reduce the size of the pleural mesothelioma tumours that are causing the pain.
- Keep track of your pain in a symptom diary and try to describe it as best you can. Write down what the pain feels like, how intense it is, where it is and if it goes away with a specific pain medicine or with any therapy like a heat pack.
- Allow a few days for your body to adjust to the dose of pain medication and for the drowsiness to improve. This will help you continue with your usual activities.
- Let your doctor know if you have vivid dreams after taking morphine. Adjusting the dose may help or you can ask to try other methods of pain relief.
- Use a laxative regularly to help relieve or prevent constipation caused by pain medicines.
- Take morphine regularly even if you’re not in pain. It’s better to stay on top of the pain rather than treat it when it returns.
For more information see Overcoming Cancer Pain.
Information last reviewed June 2015 by: Theodora Ahilas, Principal, Maurice Blackburn Lawyers, NSW; Shirley Bare, Support Group Facilitator, Asbestoswise, VIC; Geoffrey Dickin, Consumer; Victoria Keena, Executive Officer, Asbestos Diseases Research Institute, NSW; Angela Kyttaridis, Social Worker, Concord Repatriation General Hospital, NSW; Jocelyn McLean, Mesothelioma Support Coordinator, Asbestos Diseases Research Institute, NSW; Kirsten Mooney, Thoracic Cancer Nurse Coordinator, WA Cancer and Palliative Care Network, Department of Health, WA; Clin/Prof AW Musk AM, Schools of Population Health and Medicine, University of Western Australia, and Physician, Sir Charles Gairdner Hospital, Nedlands, WA; Dr Andrew Penman AM, Consultant, Asbestos Diseases Research Institute, NSW; Tanya Segelov, Partner, Turner Freeman Lawyers, NSW; Roswitha Stegmann, 13 11 20 Consultant, Cancer Council Western Australia, WA; Dr Mo Mo Tin, Staff Specialist Radiation Oncology, Chris O’Brien Lifehouse, NSW; and Prof Nico van Zandwijk, Director of the Asbestos Diseases Research Institute and Professor of Medicine, University of Sydney, NSW.