Symptoms and Controlling Them
It can take many years after being exposed to asbestos for mesothelioma to occur. The length of time taken is referred to as the latency period and is usually between 15-45 years.
In the early stages when the mesothelioma is present as very small nodules it will not show up on any scans or x-rays and is unlikely to cause any symptoms. As it progresses pleural and peritoneal mesothelioma can both cause general symptoms such as sweating, tiredness, loss of appetite and weight loss. As the disease advances pleural mesothelioma typically causes patients to feel breathless and/or experience chest pain.
Breathlessness may be due to a combination of factors. The pleura being thickened can act like a rind around the lung restricting its movement and preventing the lung from expanding.
Pain can be quite severe as the mesothelioma can extend into the tissues surrounding the pleura including nerves and bone. A variety of medication is available to control any pain experienced. Fluid may also accumulate in the space between the two layers of the pleura occupying space and again this restricts lung expansion. A cough or altered voice is also sometimes experienced. Peritoneal mesothelioma often causes swelling and pain in the abdomen.
This section describes symptoms that may be experienced by people with mesothelioma. It will include how these symptoms can be managed, based on medical evidence wherever possible. With care, much can be done to lessen the impact of most symptoms. In complex cases this requires the involvement of a variety of professionals - the multidisciplinary approach - such as doctors from palliative medicine and pain specialists, oncologists (cancer specialists), specialist nurses, physiotherapists, complementary therapists, psychologists and others. UK trade names for medicines are placed in brackets when used.
Irrespective of which anti-cancer treatment you have it is likely the mesothelioma will cause you to have some symptoms such as breathlessness, cough, pain or sweating. For this reason working with doctors and nurses who specialise in symptom management (Palliative Care Teams) is recommended for all patients.
This section does not contain an exhaustive list of symptoms that may occur in mesothelioma. If you are concerned about any symptoms do go and discuss them with your GP, clinical nurse specialist or hospital consultant and ask for specialist referral if the problems persist.
Shortness of breath - 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.
In order to prevent recurrent effusions the procedure of 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.
Shortness of breath - other causes
Loss of chest wall mobility
Loss of chest wall mobility occurs when mesothelioma attaches itself to chest wall structures that makes them less flexible, this reduces the chest movements required in breathing. Similarly, extensive thickening and rigidity of the pleura may cause the lung to become fixed or trapped. Although there are no ways of resolving these problems with medication or surgery, patients may be helped by learning to control and pace their breathing as described later in the Self-help Techniques Section.
Loss of lung volume
Loss of lung volume occurs when mesothelioma affecting the pleura grows into lung tissue thus reducing the ability of the lung to perform its vital function, the exchange of oxygen and carbon dioxide. Surgical removal of the tumour that affects the lung – a ‘debulking procedure’ might be an option and this may reduce breathlessness. In most cases patients may benefit from self-help techniques (please see Self-help Techniques Section).
Pericardial effusion is an accumulation of fluid in the membrane containing the heart – the ‘pericardial sac’. This may also cause breathlessness and is sometimes seen on chest x-ray or diagnosed by ultrasound scan or CT scan. This can be drained, usually in a cardiology unit.
Other conditions that cause breathlessness
It is important that pre-existing conditions, such as asthma or chronic bronchitis (often called COPD – chronic obstructive pulmonary disease) or heart conditions, are not forgotten when mesothelioma is diagnosed. It is necessary to continue with medications already prescribed for these conditions unless advised otherwise. Anaemia can also cause breathlessness and can be diagnosed by a blood test. This list is not exhaustive but mentions the most common conditions affecting breathing.
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. 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.
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.
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 (see below).
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.
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.
Dr Margaret Owen (Consultant in Anaesthesia)
Beatson West of Scotland Cancer Centre, 1053 Great Western Road, Glasgow G12 0YN
Tel: 0141 301 7042
Dr Mahohar Sharman (Consultant in Pain Management)
The Walton Centre for Neurology and Neurosurgery NHS Trust, Lower Lane, Liverpool, L9 7LJ
Tel. 0151 529 8294 (Pain Clinic) or 0151 529 2098 (Aintree Palliative Care Service)
Mr Nik Haliasos
Cordotomy Service (Functional Neurosurgery Unit), Essex Neurosciences Centre, Queens Hospital, Rom Valley Way, Essex, RM7 0AG.
Tel: 01708 435 000 Ext. 2658
(Secretary Claire McManus)
Mesothelioma UK recommends that patients discuss the appropriateness of this procedure with the doctor or hospital team who is currently caring for them.
Each centre has its own patient information leaflets that may have specific local information relevant to their percutaneous cordotomy service. All of these centres would be happy to answer any questions that you may have on the information provided.
Information for referral for health professionals
The referral criteria document below for health professionals is provided with permission by Dr Pounder. Each centre has its own patient information leaflets. At a minimum, full patient details are needed, including a patient contact phone number, their awareness of diagnosis and prognosis, current medication, disease spread & the other health professionals involved in their care. All centres are happy to phone patients, to answer any referral or cordotomy queries, instead of a formal pre-procedure outpatient appointment. If the patients are geographically too distant this avoids the need for repeated travel to the cordotomy centre.
Cough may be present and sometimes troublesome. It can occur due to irritation by the tumour, pleural effusion, phlegm, chest infection, pre-existing chest disease or heart problems.
Infection and heart problems need to be excluded or treated first by a doctor. Assessment may require a chest x-ray or CT scan. Medications for pre-existing asthma or other chest conditions should be continued.
If a dry cough is troublesome it may be suppressed by codeine, pholcodine linctus, or oral morphine solution. Sometimes it can be relieved by saline (salt water) via a nebuliser. Thick phlegm may be relieved by carbocisteine (Mucodyne capsules or liquid) that liquefies secretions. Excessive moist secretions may be relieved with medications such as hyoscine (can be obtained in a patch that lasts for 3 days) or glycopyrrhonium although this has to be given by injection. Occasionally cough may require treatment with steroids or drugs usually used for other conditions such as baclofen (antispasmodic), nifedipine (often used for cardiac conditions) or paroxetine (antidepressant).
Self-help measures include positioning may help. Propping up on pillows makes coughing more effective at expelling phlegm, inhalation of steam and encouraging adequate hydration, particularly with hot drinks.
Feeling tired and lacking in energy are common symptoms in all cancers. Sometimes there are easily treatable causes such as anaemia that can be detected by a blood test.
Sometimes fatigue is related to the effort of breathing (please click here for Self-help Techniques section for advice).
Cancer-related fatigue sometimes improves with attention to nutrition as many patients experience loss of appetite – please click here for Loss of Appetite and Weight Loss Section.
In some cases a trial of steroids is appropriate. Learning to slow down and pace activities and making life easier by the use of aids and appliances in the home or practical adjustments such as bringing a bed downstairs may help to conserve some energy. There is currently a great deal of research into this problem.
Peritoneal - fluid in the abdomen
In peritoneal mesothelioma, fluid accumulates in the abdominal cavity rather than the pleural cavity. This causes swelling of the abdomen that is uncomfortable and reduces appetite. This fluid can be drained in a procedure called paracentesis but there is no equivalent technique to pleurodesis (used in pleural mesothelioma) that reduces the chance of recurrence.
Repeated paracenteses are sometimes required although eventually the situation often stabilises. An indwelling catheter that can stay in place may be used if fluid is troublesome. As excessive fluid can squash the stomach it is sometimes helpful to use a drug that encourages stomach emptying such as regular metoclopramide.
Loss of appetite and weight loss
These can be very common symptoms of mesothelioma and advice from a dietitian may be helpful. Nutritional supplements, (particularly those containing fish oil derivatives such as Prosure), may help in some cases but it is unhelpful to try to force food into someone who is either feeling sickly or has no appetite.
Occasionally medication can be used to stimulate appetite – steroids can do this: either prednisolone or dexamethasone in the short-term, or megesterol acetate (Megace) which takes about three weeks to work but can be continued if effective.
The loss of a healthy physique can be extremely distressing, particularly for people who have previously been physically fit and active. Eating little and often may be much more successful than trying to keep to three meals per day.
Tastes commonly change, for example, patients may find that they tend to prefer more sweet foods than they have done before – this does not matter but means some dietary changes may be necessary in order to maximise the amount of food eaten. Oral thrush, a common mouth infection, may alter taste or cause a sore mouth that reduces food intake; it is easily treated with nystatin or flucanazole.
Coping with a disease such as mesothelioma undoubtedly causes great anxiety and distress. Many patients and their families also feel intensely angry that the disease is caused by exposure to asbestos and, in most cases, should have been prevented. Apart from learning about the serious disease and the lack of curative treatments many patients have to deal with repeated admissions to hospital and symptoms that may be difficult to control as well as benefits and compensation processes.
Although most patients manage to deal with their reactions with the help and support of family members, some may need professional help, if, for example, they become very depressed or suffer from overwhelming anxiety. Talking to a Macmillan nurse or GP will usually help and it will also enable these professionals to decide if medication or referral to a specialist such as a psychiatrist or psychologist is indicated.
Sometimes meeting other people suffering with the same or a similar illness can be helpful. Your nurse specialist should be able to advise you it there is an appropriate patient group held in your area.
Complementary therapies can be extremely effective, particularly in relieving anxiety and helping people to cope with the illness, these therapies are widely available free of charge through cancer charities and hospices, and are increasingly provided by some NHS services. Complementary therapies may include relaxation techniques, aromatherapy, massage, visualisation and others. Creative therapies such as art and music therapies may also help.
Medications to relieve anxiety or lift depression are highly effective and may help to restore some quality of life, the newer treatments have few side-effects and are not addictive.
Sweating is common in many cancers – it may result from chemical agents produced by the tumour, emotion, infection or medications such as morphine in some people. Simple measures such as loose cotton clothing and bedclothes and use of a fan will help. Alternatives to morphine may be tried. It is important to exclude chest or urinary infections as sweating due to either of these would respond to antibiotics. Some people experience drenching sweats, often particularly troublesome in the night. It can be exhausting for patients and their carers to be woken by sweats, simple measures such as loose cotton clothing and bedclothes and use of a fan will help. A number of drugs can be tried although success can vary.
Medication, poor food and fluid intake and lack of physical activity can result in constipation. Preventive measures such as attempting to drink extra fluids may help but when medication such as strong painkillers are being taken it is almost inevitable that constipation will occur and therefore essential to avoid this by the regular use of laxatives. A large variety of preparations are available and doctors and nurses can advise on the most appropriate medication.
Nausea and vomiting
These symptoms may occur in mesothelioma and are common side effects of chemotherapy and other medications, particularly some painkillers. Careful assessment is necessary in order to tailor the appropriate medication to the individual situation. If a patient is vomiting or even feeling nauseated they are not able to absorb their usual medications and it may be necessary to give these by injection or via a syringe driver (see above section on pain) until the nausea and vomiting has been controlled.
Breathing is often easier if the person sits up and leans forward with their arms supported, for example on a table.
Standing and leaning forward can also help.
Sitting at a table with head resting on pillows or forearms or standing upright, hips and back leaning against a wall may also help.
A fan may also help by blowing cool air onto the face. Similarly sitting by an open window often helps.
The use of oxygen is not usually required unless specifically recommended by a doctor. In the majority of cases a flow of cool air works just as well.
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.