Treatment for symptoms

Monday 1 June, 2015

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On this page: Breathlessness | Difficulty sleeping | Fatigue | Loss of appetite and weight loss | Constipation | Pain | Coping with symptoms | Palliative treatment | Key points


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

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.

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 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.

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 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.

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 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.

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.

Difficulty sleeping

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

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.

Loss of appetite and weight loss

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

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.

Pain

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.

Managing pain with medicines, radiotherapy and chemotherapy

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

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’.

Radiotherapy

This is used when pleural mesothelioma spreads, or presses on specific body parts like nerves, bones or major blood vessels, causing pain.

Chemotherapy

This is used to reduce the size of the pleural mesothelioma tumours that are causing the pain.

See radiotherapy and chemotherapy for more information. For further details on managing pain, call Cancer Council 13 11 20 and ask for a copy of Overcoming Cancer Pain.

Coping with symptoms

Fatigue
  • 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.
Loss of appetite
  • Eat small meals and snacks regularly.
  • Use a small plate or bowl so the plate looks fuller.
  • Eat moist food, e.g. scrambled eggs are usually easier to eat and cause less irritation to a sore mouth.
  • 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 one.
  • If solid food doesn’t appeal to you, ask your dietitian about commercially prepared supplements, such as protein drinks.
  • 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.
Constipation
  • Drink plenty of fluids – aim for 8 glasses a day.
  • Eat fresh fruit and vegetables, and fibre-rich foods (e.g. dessert prunes).
  • Exercise as much as you can every day. Talk to your doctor or physiotherapist about the amount and type of exercise that is right for you.
  • Talk to your doctor for advice about medicines to treat constipation if it’s caused by chemotherapy or other medicines.
  • Try over-the-counter laxatives such as Coloxyl® with senna, Duphalac® or Movicol®. Don’t wait too long before you start taking a laxative, and adjust the dose once you are having regular bowel movements.
  • Read Cancer Council’s booklet Nutrition and Cancer for more suggestions. Call 13 11 20 for a free copy.
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, exactly where it is, where it goes and comes from, how long it lasts, 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 medicine/ morphine 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.

Palliative treatment

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 

Key points

  • For most people, treatment is given to control symptoms and improve quality of life.
  • Breathlessness is the most common symptom of pleural mesothelioma. It can be controlled with two types of surgery: video-assisted thoracoscopic (VATS) and open surgery.
  • If a pleural effusion recurs after VATS and you are experiencing pain, it may be suggested that the fluid be controlled with open surgery.
  • An indwelling pleural drain allows fluid to be drained without surgery. A catheter is inserted through the chest wall into the pleural cavity, and drains 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.
  • Manage fatigue by setting small goals for the day and resting before you get too tired.
  • Try to drink at least 8 glasses of fluid a day, and eat fresh fruit and vegetables to ease constipation.
  • While pain is common for people diagnosed with pleural mesothelioma, it can be relieved. Pain medicines may be mild, like aspirin or paracetamol, or moderate, like codeine. Strong pain is often treated with opioid-based drugs such as morphine.
  • In some cases, radiotherapy and/or chemotherapy can be used to manage pain.
  • Palliative treatment helps to improve a person’s quality of life by managing physical and emotional symptoms. It’s best to access it early. You can contact the palliative care team soon after your diagnosis.

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.

Updated: 01 Jun, 2015