For many people, mesothelioma is diagnosed at an advanced stage, and the main goal of treatment is to manage and control your symptoms. Although there is usually no cure for mesothelioma, treatment may make you feel better and help you live longer. This is called palliative treatment.
It is often assumed that palliative care is only for people at the end of life; however, it is beneficial for people at any stage of a mesothelioma diagnosis. It does not mean giving up hope – rather it is about living for as long as possible in the most satisfying way you can and managing symptoms as they occur. Early palliative care is sometimes also called supportive care.
This section describes treatments and strategies for managing some common symptoms of mesothelioma. As you may be experiencing a number of symptoms, you may have a combination of treatments. Keep in mind, however, that you won't necessarily experience every symptom listed here.
If symptoms return after a period of relatively good health, you may be offered a different combination of treatments.
Breathlessness is the most common symptom of pleural mesothelioma and is often caused by a build-up of pleural fluid around the lungs. In the earlier stages of pleural mesothelioma, controlling this fluid build-up 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. You may also feel breathless because of the cancer itself not allowing the lung to work properly – this is known as a trapped lung.
In peritoneal mesothelioma, a build-up of fluid (ascites) can cause the abdomen to swell. This can be painful, but also puts pressure on the diaphragm and can make you feel breathless.
Infection or a low level of red blood cells (anaemia) can also cause breathlessness. Your doctor can manage this with medication.
Although living with breathlessness can be difficult, there are ways to reduce its impact on your life. For some people, there are surgical options to control the build-up of fluid.
Ways to drain fluid around the lungs or abdomen
You may have a procedure to drain the fluid from around the lungs or abdomen. If you have gone to the doctor with symptoms, this may be done before mesothelioma is diagnosed. Sometimes it is done at the same time as the biopsy.
Also known as pleurocentesis or thoracentesis, a pleural tap drains fluid from around the lungs. To drain the fluid, your doctor can numb the area with a local anaesthetic and insert a needle through the skin. An ultrasound scan is used to help the doctor guide the needle to where the fluid is. A pleural tap can also be done when a biopsy is taken during the keyhole surgery called VATS.
As well as surgical options, there are a number of ways you can manage breathlessness at home. You can also watch Lung Foundation Australia's video Managing your breathlessness.
In peritoneal mesothelioma, fluid that has built up in the abdomen (ascites) can be drained with a needle guided by ultrasound. This procedure is called a peritoneal tap or paracentesis and may be done while you are still having tests.
Ways to control fluid around the lungs
To prevent fluid building up again in the lining of the lungs, you may have a talc pleurodesis. This is best done when you are having a pleural tap during VATS, but may also be done under local anaesthetic by a respiratory physician.
Pleurodesis means closing the pleural space. The doctor inserts sterile talcum powder (talc slurry) into the pleural cavity. The talc slurry causes an inflammatory reaction that helps to fuse the two layers of the pleura together. After pleurodesis, some people experience a burning pain in the chest for 24–48 hours. This pain can be eased with medication.
Talc pleurodesis is sometimes done during the process of diagnosing pleural mesothelioma. If you haven't already had this procedure, your surgeon may suggest it now.
VATS with pleurectomy and pulmonary decortication
When fluid is drained and talc pleurodesis is done during VATS, some of the outer lining of the chest wall and lung may also be removed. This is known as parietal pleurectomy (because only the outer pleura is removed) and pulmonary decortication.
Open surgery (thoracotomy) with 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 decortication. This surgery may also be recommended as a first option if the cancer has grown in a way that makes it difficult to perform VATS successfully.
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. In some cases, all of the pleura may be removed. After this procedure, the anaesthetist inflates the lung and the surgeon closes the chest. Tubes are left in place in the chest for at least 48 hours to drain blood and any air that is leaking from the surface of the lung.
Open surgery helps to prevent fluid building up again in most cases. It also makes it easier for the lungs to expand and to transfer oxygen to the blood. Pain can last longer than after VATS, but the improvement in symptoms may make open surgery a worthwhile option if VATS has been unsuccessful or isn't possible.
Indwelling pleural catheter
Some people cannot have VATS or open surgery, either because they are too unwell or because the cancer has grown in a way that makes the surgery too difficult. In this case, you may be offered an indwelling pleural catheter (also known as a drain) to help your breathing. This can also be used if the pleural fluid builds up again after pleurodesis.
Under local anaesthetic, the specialist will insert a thin tube (the catheter) through the chest wall into the pleural cavity. You can manage the drain at home with the help of a community nurse, family member or friend. When you need to drain the fluid (usually once or twice a week), the catheter can be connected to a bottle.
Sometimes with an indwelling pleural catheter, the pleural cavity may close up over time and stop producing fluid. If this occurs, the drain will be removed.
Ways to control fluid in the abdomen
Indwelling peritoneal catheter
If fluid keeps building up around the abdomen, a small tube can be inserted to allow fluid to flow out of the body into a bottle. This is known as an indwelling peritoneal catheter or drain and is managed similarly to an indwelling pleural drain (see above).
To control ascites, your doctor may suggest a single dose of heated chemotherapy directly into the abdomen ( HIPEC). This can be given during laparoscopy, and there is some evidence that it can help prevent fluid building up again.
Improving breathlessness at home
It can be distressing to feel short of breath, but a range of simple strategies and treatments can provide some relief at home.
Treat other conditions
Let your doctor know if you feel breathless. Other conditions, such as anaemia or a lung infection, may also make you feel short of breath, and these can often be treated.
Sleep in a chair
Use a recliner chair to help you sleep in a more upright position.
Ask about medicines
Talk to your doctor about medicines, such as a low dose of morphine, to manage feelings of distress. Make sure your chest pain is well controlled as pain may stop you breathing deeply.
Check if equipment could help
Ask your health care team about equipment to manage breathlessness. You may be able to use an oxygen concentrator at home to deliver oxygen to your lungs. For social outings and medical appointments, you can use a portable oxygen cylinder. If you have a cough or wheeze, you may benefit from a nebuliser, a device that delivers medicine into your lungs.
Modify your movement
Some types of gentle exercise can help, but check with your doctor first. A physiotherapist, exercise physiologist and/ or occupational therapist from your treatment centre can explain how to modify your activities to improve breathlessness.
Relax on a pillow
Lean forward on a table with an arm crossed over a pillow to allow your breathing muscles to relax.
Create a breeze
Use a fan to direct a cool stream of air across your face if you experience breathlessness when you are not exerting yourself.
Some people find breathing exercises, acupuncture and meditation helpful. See Understanding Complementary Therapies or call Cancer Council 13 11 20.
Find ways to relax
Listen to a relaxation recording or learn other ways to relax. This can allow you to control anxiety and breathe more easily. In some states and territories, Cancer Council offers free relaxation CDs.
Getting a good night's sleep is important for maintaining your energy levels, reducing fatigue, and improving mood. Difficulty sleeping may be caused by pain, breathlessness, anxiety or depression. Some medicines can also disrupt sleep. If you already had sleep problems before the mesothelioma diagnosis, these can become worse.
Talk to your doctor about what might be helpful for you. Your medicines may need adjusting or sleep medication may be an option. There are also a number of strategies that other people with mesothelioma have found helpful (see below).
Getting a better night's sleep
- Try to do some gentle physical activity every day. This will help you sleep better. Talk to a physiotherapist, who can tailor an exercise program, and an occupational therapist, who can suggest equipment to help you move safely. You can also see Exercise for People Living with Cancer.
- Limit or cut out the use of alcohol, caffeine, nicotine and spicy food.
- Avoid using technology, such as television, computers or smartphones, before bed.
- Establish a regular routine before bed and set up a calm sleeping environment. You may find soothing music helpful. Ensure the room is dark, quiet and a comfortable temperature.
Fatigue means feeling very tired and lacking energy to carry out day-to-day activities. For people with cancer, it is different from tiredness and does not always go away with rest or sleep. You may lose interest in things that you usually enjoy doing or feel unable to concentrate 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 to improve 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 breaks throughout the day when you are completely still for a while. An eye pillow can help at these times.
- Say no to things you really don't feel like doing.
- Leave plenty of time to get to appointments.
- Sit down whenever you can.
- Ask your doctor about what sort of exercise would be suitable. Even a walk around the garden or block can boost your energy levels.
- Eat nutritious food to keep your energy levels up.
- Consider acupuncture – some find it helps with fatigue.
Lack of appetite and weight loss
Some people stop feeling interested in eating and lose weight even before mesothelioma is diagnosed. These symptoms may be caused by the disease itself, or by nausea, trouble swallowing, changes in taste or smell, breathlessness, abdominal pain, or feeling down.
Eating well will help you cope better with day-to-day living, treatment and side effects, and improve your quality of life. A palliative care specialist can help manage symptoms that impact on your appetite or ability to eat. You may also find it useful to talk to a dietitian who is experienced in treating people with cancer. They can provide helpful eating suggestions.
Eating when you have little appetite
- Eat small meals and snacks regularly. A large, full plate may put you off eating – try using a smaller plate with less daunting portions. Likewise, drink from a half-full glass.
- Eat more of your favourite foods – follow your cravings.
- Try eating salads or cold foods if hot food smells make you nauseous.
- Avoid fatty or sugary foods. These may make you feel sick.
- Use lemon juice and herbs to add flavour to bland food.
- Eat moist food such as scrambled eggs. Moister food tends to be easier to eat and will cause less irritation if you have a sore mouth.
- Add ice-cream or fruit to a drink to increase kilojoules and nutrients.
- If solid food doesn't appeal, ask a dietitian about protein drinks or other supplements.
Constipation is when your bowel motions and wind are difficult to pass and infrequent. It may be caused by not moving around as much, eating less fibre, or not drinking enough fluids. Strong pain medicines, some anti-nausea medicines and some chemotherapy drugs also cause constipation.
Severe constipation accompanied by other symptoms such as abdominal pain and swelling, nausea and vomiting can indicate a blockage in the bowel (bowel obstruction). This occasionally happens with peritoneal mesothelioma, but rarely with pleural mesothelioma. It needs prompt medical attention.
- Drink plenty of fluids.
- Eat fresh fruit and vegetables and fibre-rich foods (e.g. prunes) unless your doctor advises otherwise.
- Try to exercise every day.
- Talk to your doctor or physiotherapist to find the exercise that is right for you.
- Ask your doctor about medicines for constipation if it's caused by chemotherapy or other medicines.
- Try over-the-counter laxatives such as Coloxyl with senna, Duphalac or Movicol, but check the dose with the pharmacist and let your doctor know. Don't wait too long before starting laxatives.
- Call your treatment team or 000 if you have symptoms of a bowel obstruction (described above).
- Read the Nutrition and Cancer section.
People are naturally fearful of experiencing pain. It's vital to tell your treatment team if you are in pain. Pain can be a symptom of mesothelioma, but can also be a side effect of treatment.
The pain caused by the mesothelioma itself is usually dull and generalised – it can be difficult to say exactly where it is coming from. If the cancer spreads and presses on bones or other organs, it may feel sharp and stabbing. A sharp pain in the chest can also be caused by a blood clot in the lungs (pulmonary embolism), so seek urgent medical attention if the pain is new. Chemotherapy or surgery can injure nerves and cause pain or numbness.
Pain medicines may be mild, like paracetamol; moderate, like codeine; or strong and opioid-based, like morphine. Pain-relieving drugs may be taken as tablets, oral liquids, patches, injections or 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.
Opioids, such as morphine or oxycodone, 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 that they might become addicted to morphine. However, pain specialists believe that this won't happen if you take it as prescribed by your 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". There are now many strong pain medicines that are similar to morphine, so if one does not agree with you, ask your doctor about other options.
A small percentage of people have difficulty in controlling their pain, and may need to try many medical and non-medical methods of relieving it. A palliative care specialist or pain specialist can help find the right combination for you.
"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
Procedures to manage fluid build-up
Fluid build-up around the lungs or abdomen can cause pain as well as breathlessness. There are various treatments that can help drain the fluid and try to prevent it building up again. These are described in the breathlessness section.
This may be used to shrink mesothelioma that is pressing on body parts such as nerves, bones or major blood vessels and causing pain. Sometimes the mesothelioma can grow through the scar from VATS surgery and produce a lump in the skin. Radiotherapy can reduce the size of the lump and ease any associated pain.
This can reduce the size of the mesothelioma that is causing the pain. See more information on chemotherapy.
If you are well enough and it is technically possible, surgery may be used to remove the part of the mesothelioma causing pain and other symptoms. This is known as debulking surgery.
To find out more about managing pain, see Overcoming Cancer Pain or call Cancer Council 13 11 20.
Coping with pain
- Keep track of your pain in a symptom diary and try to describe it – what the pain feels like, how intense it is, exactly where it is, where it comes from and travels to, how long it lasts, and if it goes away with a specific pain medicine or with any other therapy, such as a heat pack.
- Allow a few days for your body to adjust to the dose of pain medicine/morphine and for the drowsiness to improve.
- Let your doctor know if you have vivid dreams, nausea or other side effects after taking a strong pain medicine such as morphine. Adjusting the dose may help, or you can try other methods of pain relief.
- Use a laxative regularly to prevent or relieve constipation from pain medicines.
- Take pain medicine regularly as prescribed, even when you're not in pain. It's better to stay on top of the pain.
"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
How palliative care can help
The options described in this section are generally considered palliative treatment because their main aim is to improve quality of life by reducing symptoms. Palliative treatment is one aspect of palliative care, in which a team of health professionals aim to meet your physical, practical, emotional, spiritual and social needs. The palliative care team also provides support to families and carers.
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.
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, see Understanding Palliative Care and Living with Advanced Cancer or call Cancer Council 13 11 20.
- For most people, treatment is given to control symptoms and improve quality of life.
- Breathlessness caused by fluid build-up is the most common symptom of pleural mesothelioma. It can usually be controlled with surgery – either a type of keyhole surgery called video-assisted thoracoscopic surgery (VATS) or a type of open surgery called thoracotomy.
- An indwelling pleural catheter allows fluid to be drained without surgery. The catheter is inserted through the chest wall into the pleural cavity, and can be collected into a bottle.
- Other ways to improve breathlessness include using a fan, leaning forward on a table over a pillow or sleeping in a recliner chair.
- Fluid in the abdomen (ascites) can be controlled with an indwelling peritoneal catheter or heated chemotherapy.
- Manage fatigue by exploring ways to improve sleep, setting small goals for the day, and resting before you get too tired.
- Try to drink plenty of fluids and eat fresh fruit and vegetables to ease constipation.
- While pain is common for people diagnosed with mesothelioma, it can be relieved. Strong pain is often treated with opioid-based drugs such as morphine.
- In some cases, radiotherapy, chemotherapy or surgery can be used to manage pain.
- Palliative treatment helps to improve a person's quality of life by managing symptoms. It's best to access it early. You can get in touch with the palliative care team soon after you have been diagnosed.
Expert content reviewers:
Dr Steven Kao, Medical Oncologist, Chris O'Brien Lifehouse, NSW; Theodora Ahilas, Principal, Maurice Blackburn Lawyers, NSW; Prof David Ball, Director, Lung Service, Peter MacCallum Cancer Centre, VIC; Cely Benchoam, Consumer; Prof Kwun Fong, Thoracic Physician, University of Queensland Thoracic Research Centre, The Prince Charles Hospital, QLD; Victoria Keena, Executive Officer, Asbestos Diseases Research Institute, NSW; Angela Kyttaridis, Social Worker, Concord Repatriation General Hospital, NSW; Dr Judith Lacey, Head of Supportive Care and Integrative Medicine, Chris O'Brien Lifehouse, NSW; Amanda Maple, 13 11 20 Consultant, Cancer Council SA; A/Prof Brian McCaughan, Thoracic Surgeon, Sydney Cardiothoracic Surgeons, Strathfield Private Hospital and University of Sydney, 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; Prof David Morris, University of New South Wales, Department of Surgery, St George Public Hospital, NSW; Rod Smith, Awareness and Support Co-ordinator, Bernie Banton Foundation. We also thank the health professionals, consumers and editorial teams who have worked on previous Cancer Council resources.