It is common to feel tired during and after treatment, and to lack energy for day-to-day activities. Fatigue for people with cancer is different from tiredness, as it may not 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.
Sometimes fatigue can be caused by a low red blood cell count (anaemia) 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.
Your guide to best cancer care
A lot can happen in a hurry when you’re diagnosed with cancer. The g uide to best cancer care for mesothelioma can help you make sense of what should happen. It will help you with what questions to ask your health professionals to make sure you receive the best care at every step.
Read the pleural mesothelioma guide
Read the peritoneal mesothelioma guide
Shortness of breath, also called breathlessness or dyspnoea, is the most common symptom of pleural mesothelioma. It is often caused by a build-up of fluid in the pleural cavity known as a pleural effusion. The fluid can put pressure on the lung, making it harder to breathe.
In the earlier stages of pleural mesothelioma, controlling this fluid build-up will improve breathlessness. The level of improvement will depend on the health of your lungs before diagnosis, and how well they function after surgery.
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.
Other problems such as infection or a low level of red blood cells can also cause breathlessness. You may also feel breathless because of the cancer itself not allowing the lung to work properly.
Ways to drain fluid
Fluid build-up around the lungs or abdomen may be drained before mesothelioma is diagnosed or at the same time as the biopsy.
- Pleural tap – In pleural mesothelioma, a pleural tap drains fluid from around the lungs. Your doctor will numb the area with a local anaesthetic and insert a needle between your ribs into the pleural cavity, which is connected to a bag for the fluid to drain into. This may take about 30–60 minutes.
- Peritoneal tap – In peritoneal mesothelioma, a peritoneal tap drains fluid from the abdomen. Your doctor will numb the area with a local anaesthetic into the abdomen and insert a needle through the skin into the peritoneal cavity, which is connected to a bag for the fluid to drain into. It takes a few hours for all the fluid to collect into a drainage bag.
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. Pleurodesis means closing the pleural cavity.
Sterile talcum powder (talc slurry) is inserted into the pleural cavity, which causes an inflammation that helps fuse the two layers of the pleura together and closes the space. A talc pleurodesis is best done during VATS by a cardiothoracic surgeon, but is sometimes done by a respiratory physician.
After a talc pleurodesis, some people experience a burning pain in the chest for 24–48 hours. This pain can be eased with medicine and you will be able to have physiotherapy to improve lung expansion.
VATS with pleurectomy decortication
When fluid is drained and talc pleurodesis is done during VATS, part or all of the outer layer of the pleura (parietal pleura) is removed. This is known as pleurectomy decortication or PD. This may be done when the parietal pleura, which lines the chest wall, has become thick and inelastic.
Open surgery (thoracotomy) with pleurectomy decortication
Even after VATS and talc pleurodesis, the fluid may build-up around the lungs again, causing breathlessness. The surgeon may suggest more extensive surgery called thoracotomy with pleurectomy decortication (PD).
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. A thoracotomy 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. Instead, you may be offered an indwelling pleural catheter (also known as a drain) to remove the fluid and improve your breathing. This can also be used if the pleural fluid builds up again after pleurodesis.
Under local anaesthetic, the specialist inserts a thin tube through the chest wall into the pleural cavity. When the fluid builds up and needs to be drained (usually once or twice a week), the end of the catheter is 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 into a bottle. This is known as an indwelling peritoneal catheter or drain and is managed similarly to an indwelling pleural catheter.
To control ascites, your doctor may suggest a single dose of heated chemotherapy directly into the abdomen. 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.
- Treating other conditions – 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 ease breathlessness. Make sure your chest pain is well controlled, as pain may stop you breathing deeply.
- Check if equipment could help – to improve the capacity of your lungs, you can blow into a device called an incentive spirometer. You may be able to use an oxygen concentrator at home to deliver oxygen to your lungs, or a portable oxygen cylinder for outings. 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.
- 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 handheld fan to direct a cool stream of air across your face if you experience breathlessness when you are not exerting yourself.
- Find ways to relax – listen to a relaxation recording or learn other ways to relax. Some people find breathing exercises, acupuncture and meditation helpful.
Pain may 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, so seek urgent medical attention if the pain is new. Chemotherapy or surgery can injure nerves and cause pain or numbness.
Ways to control pain
- Pain medicines – Different types and strengths of pain medicines may be used to achieve good pain control. Opioids, such as morphine or oxycodone, are the most common drugs used to control moderate to severe mesothelioma pain.
- Procedures to manage fluid build-up – Aside from breathlessness, fluid build-up around the lungs or abdomen can cause pain. Various treatments can help drain the fluid and try to prevent it building up again.
- Radiation therapy – This may be used to shrink mesothelioma that is pressing on 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. Radiation therapy can reduce the size of the lump and ease any associated pain.
- Chemotherapy – This can reduce the size of the mesothelioma that is causing the pain.
- Debulking surgery – 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. Talk to your doctor for more information.
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.
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 or exercise physiologist, who can tailor an exercise program, and an occupational therapist, who can suggest equipment to help you move safely.
- Limit or cut out the use of alcohol, caffeine, nicotine and spicy food.
- Avoid using technology, such as television, computers or smartphones, before bed, as the light tells your body it’s time to wake up.
- Follow a regular routine before bed and set up a calm sleeping environment. You may find soothing music or a relaxation recording helpful. Ensure the room is dark, quiet and a cool temperature.
- Listen to our Sleep and Cancer podcast episode.
Lack of appetite and weight loss
Some people have little interest 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 affect 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
- Have small meals and snacks regularly. A large, full plate may put you off eating – try using a smaller plate with smaller portions. Likewise, drink from a half-full glass.
- Eat moist food such as scrambled eggs. Moist food tends to be easier to eat and will cause less irritation if you have a sore mouth.
- Avoid fatty or sugary foods if these make you feel sick.
- Use lemon juice and herbs to add flavour to bland food.
- Eat more of your favourite foods – follow your cravings.
- If solid food doesn’t appeal, ask a dietitian about protein drinks or other supplements.
Having infrequent or difficult-to-pass bowel motions is known as constipation. Common causes include lack of exercise, eating less fibre, or not drinking enough fluids. Opioid medicines, some anti-nausea medicines and some chemotherapy drugs also cause constipation.
Severe constipation plus abdominal pain, bloating, nausea and vomiting may be signs of a blockage in the bowel. This occasionally happens with peritoneal mesothelioma, but rarely with pleural mesothelioma. To relieve the symptoms, you may have a small tube (stent) put in to help keep the bowel open. If the bowel is completely blocked, it needs to be cleared with emergency surgery.
- Drink plenty of fluids.
- Eat fresh fruit and vegetables and fibre-rich foods (e.g. prunes), unless your doctor advises otherwise.
- Try to be physically active every day. Talk to your doctor or physiotherapist to find the exercise that is right for you.
- Ask your doctor how to manage constipation. You may be prescribed medicines to help control symptoms.
- Try over-the-counter laxatives, but check the dose with the pharmacist and let your doctor know.
- Talk to your treatment team about how to manage bowel obstruction. If your stomach is swollen and you are in pain, call 000 as it may be an emergency.
For many people, mesothelioma is diagnosed at an advanced stage, and the main aim of treatment is to manage symptoms and keep them under control for as long as possible. This is called palliative treatment.
Palliative treatment can be used at any stage of advanced cancer to improve quality of life. It does not mean giving up hope – rather, it is about living as fully and comfortably as possible.
Palliative treatment is one aspect of palliative care, in which your health providers aim to meet your physical, emotional, cultural, social and spiritual needs. Palliative care also provides support to families and carers.
Contacting a specialist palliative care service 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 service can become involved at any time.
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Expert content reviewers:
A/Prof Brian McCaughan, Cardiothoracic Surgeon, Chris O’Brien Lifehouse, NSW; Theodora Ahilas, Principal Lawyer, Maurice Blackburn Lawyers, NSW; Prof David Ball, Director, Lung Service, Peter MacCallum Cancer Centre, VIC; Shirley Bare, Consumer; Cassandra Dickens, Clinical Nurse Consultant, Cancer Care Coordinator – Thoracic Malignancies, Sunshine Coast University Hospital, QLD; Penny Jacomos, Social Worker, Asbestos Diseases Society of South Australia, SA; A/Prof Thomas John, Medical Oncologist, Senior Clinical Research Fellow, Austin Health, and Olivia Newton-John Cancer Research Institute, VIC; Victoria Keena, Executive Officer, Asbestos Diseases Research Institute, NSW; Penny Lefeuvre, Consumer; Jocelyn McLean, Mesothelioma Support Coordinator, Asbestos Diseases Research Institute, NSW; Prof David Morris, Peritonectomy Surgeon, St George Hospital and University of New South Wales, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council Western Australia; Prof Anna Nowak, Medical Oncologist, Sir Charles Gairdner Hospital, and Professor of Medicine, School of Medicine and Pharmacology, The University of Western Australia, WA; Prof Jennifer Philip, Palliative Care Specialist, St Vincent’s Hospital, Peter MacCallum Cancer Centre and Royal Melbourne Hospital, VIC; Nicole Taylor, Acting Lung Cancer and Mesothelioma Cancer Specialist Nurse, The Canberra Hospital, ACT.
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The information on this webpage was adapted from Understanding Mesothelioma - A guide for people with cancer, their families and friends (2019 edition). This webpage was last updated in August 2021.