Mesothelioma’ is a form of cancer which affects the thin
membranes lining the chest (pleural Mesothelioma) or, less
commonly, the linings of the abdomen (peritoneal Mesothelioma).
It may also surround the organs within these cavities for example
the heart, lung and intestines.
Pleural Mesothelioma
The pleural lining has two layers – an inner (visceral) layer lining
the lung and an outer (parietal) layer lining the chest wall. The
pleura produce fluid to lubricate the space between the two layers
allowing the layers to slide comfortably over each other as we
breathe.
Pleural Mesothelioma causes the pleura to thicken. This may
make it press on the lung or attach itself to the chest wall. Fluid,
sometimes several litres, can collect between the two layers and
cause breathlessness. This is known as a pleural effusion.
Peritoneal Mesothelioma
The peritoneum also has two layers, the inner (visceral) layer next
to the abdominal organs and the outer (parietal) layer lining the
abdominal wall. Peritoneal Mesothelioma causes the peritoneum
to thicken and fluid (known as ascites) to collect in the abdomen
causing it to swell.
What Causes Mesothelioma
Exposure to asbestos is the only known cause of Mesothelioma. It
was a relatively rare disease up to the 1980’s, but is now occurring
more frequently because of the heavy industrial use of asbestos in
the post-war years. For most people diagnosed with Mesothelioma
the exposure happened 20-40 years previously although it could,
in some instances, be a longer or a shorter interval. Sometimes the
asbestos exposure may have been very brief and not always easy
to identify. Mesothelioma is, however, more common in people
who have had repeated exposure, usually in a work environment.
There are several types of asbestos all of which have been known
to cause Mesothelioma.
How Is Mesothelioma Diagnosed
Early diagnosis is difficult. In most cases the first obvious sign is
sudden breathlessness caused by an accumulation of fluid in the
pleural space. It may be accompanied by other symptoms such
as chest pain. Scans and X-rays can provide strong evidence to
support the diagnosis especially coupled with a history of asbestos
exposure.
However, other diseases can produce these symptoms and to
be certain of a correct diagnosis more investigations often need
to be carried out. Scans, fluid taken for laboratory examination,
needle biopsy or keyhole surgery to take a biopsy (a small sample
of tissue) are likely to be carried out to help confirmation of
diagnosis. These tests and results could take several weeks to
complete.
Is There Any Treatment That May Help
Mesothelioma responds very little to the normal cancer treatments
such as chemotherapy and radiotherapy. Any treatment offered
depends on several factors. These should include patient choice,
how well someone is, and how advanced the disease is. At present,
there is no known cure for this disease.
The initial most helpful treatment deals with the symptoms of
the disease. Removing fluid from around the lung can help to
relieve breathlessness. It can be drained either by drawing it
off or inserting a small drainage tube. However, fluid often re accumulates and the chest physician or surgeon may perform a procedure called a 'Pleurodesis’.
This is an attempt to “stick” the lung surface to the chest wall by
inserting sterile talc into the pleural space. This may be done by
a surgeon using ‘keyhole surgery’ otherwise called VATS –Video
assisted thoracoscopic surgery.
Surgery
A relatively minor form of surgery may be carried out during the
VATS procedure, involving the removal of some of the tumour.
Surgery may also improve some of the symptoms of the disease.
A major operation called an Extra-pleural Pneumonectomy (EPP)
is suitable only for a very select group of patients with early stage
disease and who are physically and mentally able to tolerate such
extensive surgery. The operation involves the removal of the whole
affected lung along with its lining, the lining of the heart and part
of the diaphragm. A limited number of thoracic surgeons in the
country can carry out this procedure Assisted Thoracoscopic Surgery
Chemotherapy
This is drug treatment to destroy or control cancer cells. Unlike
other cancers there is no evidence that chemotherapy ever cures
Mesothelioma. Some trials and studies have however indicated that
it may help to improve symptoms temporarily and may extend life
expectancy slightly.
Not all patients with Mesothelioma will benefit from chemotherapy
and there is no way of knowing which patients will benefit and
which will not. It is important for you to discuss this with doctors
and nurses involved in providing it.
Radiotherapy
This is the use of high energy radiation to kill diseased cells in the
body. In Mesothelioma it can be used in two ways:
1)A short course of treatment to the chest wall where a biopsy has
been done. This is a preventative measure and is intended to stop
Mesothelioma growing in the skin layer.
2) Some patients may benefit from some pain relief following
radiotherapy
Approximately 1800 new cases of Mesothelioma are diagnosed each year in England. The large majority of patients will die within a year of diagnosis and only a very small minority will survive 5 years.
It is imperative that Mesothelioma patients should be diagnosed as early as possible, offered radical treatment where this is appropriate, have access to optimal palliative interventions and care and be offered appropriate information and advice including on financial benefits and possible compensation.
A Framework has been developed by the Department of Health on advice from members of its Lung Cancer and Mesothelioma Advisory Group and from the British Thoracic Society. It includes comments received during consultation with cancer networks, professional groups and patients groups. I have no doubt that implementation of the recommendations in this Framework will improve quality for care for patients with Mesothelioma.
Professor Mike Richards (National Cancer Director )
There are around 1800 new cases of Mesothelioma a year in the UK and the disease is almost always fatal. More people die of mesothelioma than of cervical cancer, malignant melanoma or endometrial carcinoma. Mesothelioma incidence is still rising and is expected to peak between 2010 and 2015. Between 2006 and 2020 up to 30,000 people will die of the disease in the UK.
In most cases, Mesothelioma is an industrial disease which leads to complicated legal and financial information needs.
More research is necessary if outcomes are to be improved;
Mesothelioma is a cancer which principally affects the lining of the lungs (pleura). However it can also affect the peritoneum (a thin lining in the abdomen), and occasionally, arises in the membranes covering either the testes (tunica vaginalis) or the heart (pericardium). Over 90% of Mesothelioma with a known first site occurs as pleural Mesothelioma.
Mesothelioma has a very strong association with exposure to asbestos and is exceedingly rare in its absence. When asbestos fibres are inhaled, malignant change occurs in a proportion of individuals and cancer of the pleura can follow. It is believed that nearly all deaths caused by Mesothelioma are linked to asbestos exposure.
There is a long ‘lag time’ between exposure to asbestos and the development of Mesothelioma, this varies from a minimum of about 10 years upwards, the average interval being in the order of 30-40 years
Cases of Mesothelioma in the UK used to occur mainly in people who had worked in ship building and heavy engineering (which used significant amounts of asbestos) and asbestos product manufacturing industries. For this reason, Mesothelioma was more common in areas such as Scotland, the North East and Southern England where many of these industries were based.
An increasing proportion of cases are now being diagnosed in individuals who may have had less intense exposure such as the building industry (carpenters, electricians, demolition workers etc.) and people who have worked in buildings where asbestos construction materials have been used and become disturbed in some way. It is estimated that these now represent the majority of new cases and therefore there is a large number of people who are at risk of the disease who may be unaware of their exposure to asbestos.
Men are far more likely to develop Mesothelioma than women, mainly because they were more likely to have been exposed to asbestos in the course of their work than women were. However, family members of people exposed to asbestos also have a higher risk of developing Mesothelioma because of fibres brought into the home on work clothes. A third group of cases probably arise because of ‘environmental’ exposure, for example in individuals who have lived in close proximity to asbestos factories or dumping sites. There is also a small number of deaths each year in people with no history of asbestos exposure – evidence suggests that there are likely to be at least 50 of these so-called “spontaneous” Mesothelioma cases each year in Great Britain.
The use, supply and importation of asbestos and asbestos products is now banned for all but a few exceptions by the Asbestos (prohibition) Regulations. Work with asbestos generally requires a licence and the use of strict control measures, including personal protective equipment such as respirators. The latest revision of the Control of Asbestos at Work Regulations introduced, from May 2004, a duty on those responsible for commercial premises to manage the asbestos contained in them (source: www.HSE.gov.uk).
The Health & Safety Executive (HSE) has found that the geographical variation in incidence is associated with the geographical locations of asbestos related industries. High risk areas tend to be those containing, or near to, industrial sites where asbestos was used extensively in the past – shipyards, asbestos manufacturing factories and railway engineering works for example (source: www.hse.gov.uk).
Information from the Health & Safety Executive (HSE) also shows that the annual number of Mesothelioma deaths is increasing from 153 in 1968 to 1633 in 2000 to 1969 in 2004. The annual total number of Mesothelioma deaths in Great Britain is predicted to peak during the period 2011 to 2015 at a level up to 2450 deaths per annum
The survival rate for Mesothelioma is poor compared with other cancers. This is thought to be due to the advanced nature of Mesothelioma at the time of diagnosis and the lack of effective treatments. However, with earlier detection and improved services it could be possible to extend and improve the quality of life of Mesothelioma patients and there is the potential for radical therapy in a small minority of patients which could significantly increase their length of survival. At the very least, such early stage patients should have the opportunity to be entered into high quality trials of new therapeutic approaches.
Raising Awareness
As with all cancers, it is likely that the earlier Mesothelioma is diagnosed the better the outcome for the patient in terms of improved symptom control and possibly length of survival. To ensure early presentation, the awareness of Mesothelioma among two target audiences needs consideration:
A. The Public;
B. Clinicians (both in primary care and non-specialist hospital departments).
There is very little known about public awareness of this condition and whether/if there is benefit to be gained by raising awareness of the risk across the general population given the potential psychologicial impact of knowing that, even if you were diagnosed early, Mesothelioma is at present an incurable disease.
Supportive and Palliative Care
As Mesothelioma is almost always fatal, all patients will need palliative interventions and care at different stages of their illness. Supportive and palliative care therefore has a key role to play for both patients and their families and carers.
Patients with Mesothelioma frequently suffer distressing symptoms. These may include breathlessness, chest pain, fatigue and weight loss. Intractable pain in particular is a key issue. Specialist palliative care including specific interventions such as radiotherapy to the site of chest drainage/biopsy, nerve blocks & cordotomy, are of particular importance in providing relief for some patients.
The MARS (Mesothelioma and Radical Surgery) study (funded by Cancer Research UK and the June Hancock Mesothelioma Research Fund). This is a pilot study to determine the feasibility and acceptability of performing a randomised trial comparing extra-pleural pneumonectomy (EPP) against no EPP surgery within the context of trimodality therapy (chemotherapy, surgery, post-operative radiotherapy). It is currently recruiting ahead of schedule;
The MESO-VATS study (funded by the BUPA foundation) – a prospective randomised controlled trial of video-assisted thoracoscopic (VATS) cytoreductive pleurectomy compared to talc pleurodesis in patients with suspected or proven malignant Mesothelioma. This has been underway for 2 years and is expected to expand into further centres.
The MES01 trial - a trial which compared chemotherapy against active supportive care alone for patients with malignant pleural Mesothelioma recently closed for recruitment. It is expected to report in 2007 and planning is underway for MES02.
The National Cancer Research Institute (NCRI) Lung Clinical Studies Group has established a Mesothelioma sub-group to facilitate the development of these and other clinical trials in the disease
Benefits Related to Employment - A patient (except if they were self-employed) may be entitled to the following benefits, if they have developed Mesothelioma after coming into contact with asbestos as a result of paid employment:
a) Pneumoconiosis, Byssinosis and Miscellaneous Diseases Benefit Scheme – a patient may be eligible to make a claim under this scheme if it is believed that the disease developed because of a job done before 5 July 1948;
b) Industrial Injuries Disablement Benefit (IIDB) – a patient may be eligible for this benefit if the disease developed because of a job involving working with asbestos or being exposed to asbestos after 4 July 1948
Claims for both these benefits should be made as soon as possible so that a patient does not lose out on benefits they may be entitled to. Patients, their families, or NHS staff can contact the Benefit Enquiry Line on 0800 88 22 00 if they need further information.
If exposure to asbestos might have happened during service in the armed forces rather than in other employment, a claim can be made for a war disablement pension from the Veterans Agency by contacting on 0800 169 2277.
Other Benefits
Other benefits that patients with mesothelioma or their carers may be eligible to claim (sometimes in addition to the benefits above) include:
a) Disability Living Allowance – if someone is under the age of 65 they may be able to claim this allowance if they need help with personal care needs or have difficulty getting around because of their illness.
b) Attendance Allowance – if someone is over the age of 65 and needs help with personal care needs because of their illness, they may be able to claim an Attendance Allowance. If a patient’s illness means that they are not expected to live for more than six months, special rules apply to claims for this allowance to make sure any entitlement is received quickly and easily.
c) Constant Attendance Allowance – if a patient is in receipt of Industrial Injuries Disablement Benefit or a War Disablement Pension and needs daily care and attention because of the disability they may also be entitled to claim a Constant Attendance Allowance.
d) Carer’s Allowance – if a patient is in receipt of the highest or middle rate care component of Disability Living Allowance, Attendance Allowance or some rates of Constant Attendance Allowance and has someone helping to look after them, they may also be entitled to claim a Carer’s Allowance.
e) Other Benefits may also be paid to replace or top up earnings and
help with housing costs - it is important that patients get expert advice about all these benefits and the Benefit Enquiry Line on 0800 88 22 00 is a useful starting point.
Compensation
If Mesothelioma is likely to have been caused by exposure to asbestos at work, it may be possible to claim compensation from the employer, or from several employers, by suing them for negligence. If Mesothelioma is likely to have been caused because of clothing contamination or environmental exposure, it may also be possible to claim compensation from the relevant firm.
This is a very specialised area of law and a patient or their family should seek advice from a specialist solicitor who will know how to deal with a claim and to make sure it is dealt with as quickly as possible. If the person with Mesothelioma is a union member, or was when they worked with asbestos, their union may be able to refer them to an experienced solicitor. If not, a local Asbestos Victims Support Group if one exists in the area, will be able to help with advice. They will know of expert solicitors. The Association of Personal Injury Lawyers also has a list of experienced asbestos solicitors and the Law Society, or the Law Society of Scotland, will be able to provide a patient with a list of solicitors in their area.
As exposure may have happened several decades ago, an employer may no longer be in business. This does not mean that a claim cannot be made, as the solicitor may be able to claim against the employer’s insurer.
In addition, the Pneumoconiosis Etc. (Workers’ Compensation) Act 1979 provides one-off lump sum compensation for sufferers (or their dependants if they have died) of this disease who are unable to claim damages from the employers who caused the disease, because they have ceased trading.
Sources of help, advice and support
Leaflets are available for some of the benefits referred to in this annex setting out more information about the qualifying conditions, how to claim and where to obtain the relevant claim forms. These can be downloaded and printed from: http://www.jobcentreplus.gov.uk/jcp/customers/leaflets_and_guides/dev_011720.xml.html.
In addition, the following are useful sources of advice for patients with, or families affected by, Mesothelioma along with NHS employees who may require advice:
a) Mesothelioma UK (the National Macmillan Mesothelioma Resource Centre): 0800 169 2409
b) Cancer BACUP: 0808 800 1234
c) British Lung Foundation helpline: 0845 850 5020
d) Department for Work and Pensions benefit enquiry line 0800 88 22 00, Textphone 0800 24 33 55
e) Forum of Asbestos Victims Support Groups: 0161 636 7555
f) Association of Personal Injury Lawyers: 0870 609 1958
g) Law Society: 0870 606 6575
h) The Law Society of Scotland: 0131 226 7441
i) Local Citizens Advice Bureau, Veterans Agency, Welfare Rights Organisations and Trade Unions can be found in the phone book.
j) Veterans Agency 0800 169 2277, Textphone 0800 169 3458
k) Benefit Enquiry Line: Phone: 0800 88 22 00Textphone: 0800 24 33
http://www.direct.gov.uk/disabledpeople
