For many people, pleural mesothelioma is diagnosed at an advanced stage. The main goal of treatment is to manage your 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 section 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 using surgery will improve breathlessness (see below). 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.
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 the 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.
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 decortication. 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.
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 1–2 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.
For more information about managing breathlessness, call Cancer Council 13 11 20.
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 social outings and medical appointments.
Getting a good night’s sleep is important for maintaining your energy levels and reducing your 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 with soothing music.
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 always go away with rest or sleep.
If fatigue continues for long periods of time, you may lose interest in things that 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.
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.
Constipation is when your bowel motions are difficult to pass and infrequent. It may be caused by reduced physical mobility, low fibre intake, and not drinking enough fluids. Some medications, particularly strong pain medicines and anti-nausea medicines, may cause constipation.
People are naturally fearful of experiencing pain, and it’s vital to let your health care team know if you are in pain. If it is caused by the pleural mesothelioma itself, it is usually a dull, generalised pain, but if the cancer spreads or presses on the ribs, it may be sharp and affect your breathing. Pain can also be a side effect of treatment. Chemotherapy and surgery can injure nerves and cause pain or numbness in certain parts of your body.
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.
"I didn’t want to resort to morphine. I felt it meant I was giving up, and I was so scared I would become addicted to it or it would make me sleep all the time. The pain got so severe that I gave in and accepted some morphine. I wondered afterwards why I had resisted. I am pretty much pain-free most of the time and quite alert when I need to be. It has made such a difference to my quality of life." – Jack
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 that a person does not become addicted to morphine if they are taking it as prescribed by their doctor 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’.
This is used when pleural mesothelioma spreads, or presses on specific body parts like nerves, bones or major blood vessels, causing pain.
This is used to reduce the size of the pleural mesothelioma tumours that are causing the pain.
Palliative treatment helps to improve a person’s quality of life by reducing pain and managing other physical and emotional symptoms. Treatment may include radiotherapy, chemotherapy or other medicines.
It is often assumed that palliative treatment is for people at the end of life; however, it is beneficial for people at any stage of a mesothelioma diagnosis. Contacting the palliative care team soon after diagnosis gives them the opportunity to get to know you, your family and your circumstances. Although other professionals will be responsible for your treatment in the earlier part of your diagnosis, the palliative care team can become involved when needed and manage your care when active medical management becomes less effective.
Ask the doctor in charge of your medical care about making an appointment with the palliative care team. To find out more about palliative care and advanced cancer, call Cancer Council 13 11 20.
"My husband did not want to accept help from the palliative care people. He said that once they got involved he would not have much longer left to live. But his GP told him about what they do and how much they can help with symptoms and comfort. He agreed to try and now would not be without them." – Grace
Reviewed: 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.