What is it?

The most common cause of shortness of breath in mesothelioma patients is pleural effusion. This is an accumulation of fluid produced by the mesothelioma tumour in the space between the two layers of the pleural membrane. The majority of people with pleural mesothelioma develop pleural effusions, particularly in the early stage of the disease. Large effusions, particularly if they develop rapidly, may cause severe shortness of breath.

The effusion is confirmed by chest x-ray and the immediate treatment is drainage (‘aspiration’, ‘pleural tap’ or ‘thoracocentesis’) in hospital with rapid relief of breathlessness. In some cases the drainage tube is left in place for a few days to ensure all the fluid is removed. Unfortunately pleural effusions often recur and can become increasingly difficult to drain because the fluid tends to form in pockets (i.e. becomes ‘loculated’) or becomes very sticky.

How can it be managed?

In order to prevent recurrent effusions a procedure called pleurodesis is performed. Pleurodesis is a method of making the two layers of the pleural membrane stick together which obliterates the space between them thus preventing the formation of further effusions.

The procedure involves introducing an irritant material, usually sterile talc, via a tube (either a chest drain or thoracoscope) into the space between the pleural layers (any fluid has to be drained first). This is sometimes aided by video-camera viewing of the inside of the chest – a VATS (video-assisted thoracoscopy) procedure. Pleurodesis tends to be successful in most cases, particularly if performed early on in the disease.

Managing pleural effusions with a tunnelled indwelling catheter (TIPC) is becoming more common, this can be useful when fluid can’t be managed by other means, this involves having a tube inserted into the pleural space which exits out of the skin. The tube is neatly secured under a dressing until needed and when fluid needs to be drained it can be uncovered and connected to a drainage bottle that contains a vacuum.

Before this technique was developed patients often had repeated trips to the hospital to have fluid drained away to relieve breathlessness, having a TIPC means fluid can be easily drained off at home either by the community nurses or sometimes patients and their relatives learn to do this.

A group of healthcare professionals have created the My Pleural Effusion Journey website, to help patients and carers understand more about the different options and what might be the right choice for them.

Other less common causes of shortness of breath include:

What is it?

Coughing is an important reflex to clear the throat and to stop foreign bodies entering the airway. Nearly half of all mesothelioma patients will be affected by cough which has multiple complex causes. The cough is usually ‘dry’ (not producing phlegm/sputum) in its nature and may lead to fatigue (see below), breathlessness (see above), pain (see below), poor sleep, retching, incontinence, low mood and embarrassment.

How can it be managed?

• Sip water regularly and staying hydrated
• Break the cough cycle by sniffing and swallowing
• Suck boiled sweets or ice cubes or try chewing gum
• Steam inhalations
• Sleeping propped up with pillows
• Ginger tea or hot honey and lemon drink
• Avoid triggers such as temperature changes, perfumes, allergens, smoke

Your specialist nurse or local doctor may be able to advise on medication to help such as simple linctus (available without a prescription), some pain killers that contain codeine or morphine and steroids. It is important to only take these medications if advised by your nurse or doctor.
If your cough has changed at all or if you are producing phlegm, it is important to seek advice from your local doctor.

What is it?

Pain is a common symptom of mesothelioma. In most cases it can be controlled with medication. Typically pain is on one side of the chest, sometimes in the shoulder or back, and may be dragging or like toothache. Movement or deep breathing may make it worse.

How can it be managed?

The usual practice is to use simple painkillers initially such as paracetamol and ibuprofen. If these are ineffective the next step is to use morphine. Patients are often concerned about taking morphine because of its associations with illegal drug abuse, addiction, and belief that it is very powerful. In practice these worries are unnecessary, morphine is a safe drug when used as prescribed, an effective painkiller that does not usually cause addiction when used for pain, and should always be started in a low dose and only increased if necessary.

Medications
Morphine is usually commenced in a quick acting oral (by mouth) form, this may be liquid (Oramorph) or tablet (Sevredol). Patients are advised to take a dose every 4 hours if they have pain; after a few days the usual daily dose can be converted into a once or twice a day longer acting preparation and taken on a regular basis (e.g. Zomorph, MST etc). In the event of pain occurring in between the regular doses, patients are usually advised to have some oral morphine liquid or short-acting tablets to use – this is referred to as the ‘breakthrough dose’ for ‘breakthrough pain’.

Although morphine is an excellent drug it is not effective for all types of pain, other opioids (morphine-like drugs), such as methadone, may be more effective. Sometimes it is helpful to take regular paracetamol or ibuprofen as well because these have different modes of action on pain. In cases where there is involvement of nerves the pain may not respond completely to opioids and it may be helpful to add different types of medication. Some drugs usually prescribed for either epilepsy or depression have unique pain-relieving properties and can alleviate ‘nerve pain’. Palliative medicine teams and pain specialists can advise when pain is not responding to medication and in some cases specialised pain control techniques are necessary. A TENS (transcutaneous electrical nerve stimulator) machine may be useful.

If patients are unable to take medications by mouth it is possible to administer them in a daily infusion through a needle just under the skin via a syringe driver. This is a small battery-operated pump that slowly expels the infusion of medication from a syringe. This is a safe and effective method of delivery and many patients use this at home. The drugs are renewed, usually daily, by nursing staff. Alternatively one opioid, fentanyl, can be administered as a patch stuck onto the skin, this has to be changed every 3 days.

Alternatives to medication
Occasionally it may be necessary to use techniques that destroy nerves that are particularly troublesome. These can include nerve blocks, spinal or epidural infusions of painkillers, and destruction of spinal cord nervous tissue by a technique called percutaneous cordotomy.

A procedure called a Percutaneous Spinal Cordotomy may help relieve pain that has not responded to conventional pain medicines. The procedure involves heating some of the pain nerves in the spinal cord that transmit pain information to the brain. It involves placing an electrode (about the size of a blood test needle) into these pain-carrying pathways, using special x-ray guidance. It is done under a local anaesthetic; the patient is awake so that they can communicate any sensations felt during the procedure.

Patients who have been treated with this procedure can gain long-term pain relief (months to years). Sometimes the procedure can be unsuccessful because the pain nerves cannot be identified safely. Any risk should be discussed with the doctor. There are currently four centres offering a Percutaneous Cordotomy service to patients – these cover the South, North, North-West and Midlands. They have all agreed to have their details circulated.

Mesothelioma UK recommends that patients discuss the appropriateness of this procedure with the doctor or hospital team who is currently caring for them.

Breathing control techniques can help patients to regain a sense of mastery over distressing shortness of breath. These simple techniques can be taught by physiotherapists, some Macmillan or lung cancer nurses, palliative medicine or hospice teams or through ‘Breathe Easy’ groups run by the British Lung Foundation.

Breathlessness can make people anxious. If anxiety is severe it can make the breathlessness worse. In addition to learning breathing control, a light sedative available such as lorazepam or diazepam may help. Relieving anxiety also helps to relieve muscular tension in the chest wall w affects breathing.

Relaxation exercises, self-hypnosis or visualisation are techniques that can also help patients deal with breathlessness – they are often taught by complementary therapists and advice can be obtained from Macmillan nurses, palliative care teams or hospices.