mesothelioma

What is Mesothelioma?
Mesothelioma (also known as ‘diffuse’ or ‘malignant’ Mesothelioma) is a
form of cancer, which affects the thin membranes which line the chest
(pleural mesothelioma). Less commonly it can affect the linings of the
abdomen (peritoneal mesothelioma). It may also surround the organs
found within these cavities for example the heart, lung and intestines.
Pleural Mesothelioma
The pleural lining has two layers - an inner (visceral) layer which lines the
lung and an outer (parietal) layer which lines 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





Pleural Mesothelioma
The pleural lining has two layers - an inner (visceral) layer which lines the
lung and an outer (parietal) layer which lines 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 which is next
to the abdominal organs and the outer (parietal) layer which lines the
abdominal wall. Peritoneal Mesothelioma causes the peritoneum to thicken
and fluid to collect in the abdomen, this collection of fluid is called ascites
and causes the abdomen to swell. Peritoneal Mesothelioma is much less
common than Pleural Mesothelioma.

What causes Mesothelioma?
Exposure to asbestos is responsible for the majority of cases. There are
thought to be possibly other unknown causes. It has previously been a
rare disease but is now occurring more frequently because of the heavy
use of asbestos in the post-war years. For most people diagnosed with
Mesothelioma the exposure happened 20-40 years previously. (It may in
some instances be a longer or a shorter interval than this.) 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 and in most cases the first obvious sign is
sudden breathlessness caused by an accumulation of fluid in the pleural
space - a pleural effusion. 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, possibly needle biopsy or
keyhole surgery to take a biopsy (a small sample of tissue) are likely to be
carried out to help with the confirmation of the diagnosis. These tests and
results may 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. There are a number of trials being run in
an attempt to improve treatment but nothing has been found to cure this
disease. Any treatment offered depends on several factors. These should
include patient choice, how well someone is, and how advanced the
disease is.
The initial most helpful treatment is that which deals with symptoms.
Removing fluid from around the lung can help to relieve breathlessness.
Firstly the fluid may be drained either by drawing off fluid or inserting a
small drainage tube. However the fluid often reaccumulates and the chest
physician or surgeon may perform a procedure called a ‘Pleurodesis’.

Surgery
There are minor forms of surgery which the surgeon may carry out during
the VATS procedure which can involve removing some of the bulk of the
tumour. Surgery may also improve some of the symptoms of the disease.
A very major operation which is called an Extra-pleural Pneumonectomy
(EPP) is only suitable 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. This operation is only carried out by a limited number of
thoracic surgeons in the country.
Chemotherapy
This is drug treatment used to try to destroy or control cancer cells. Unlike
some 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 the 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 with pain may get some benefit from radiotherapy.

Will it spread to other parts of my body?
It is unusual for distant spread to be a problem. Mesothelioma spreads
slowly outwards from its starting place, along the lining of the chest or
abdominal wall, and problems experienced are usually confined to that
locality and areas in close contact.

Will I have any pain? If so how can it be
handled?
Because of the nature and position of the tumour near to the chest wall,
some people with mesothelioma have aches and pains even before the
diagnosis, whilst others have few problems with pain. It is important to
realise that, if you are one of the unfortunate ones with early pain, this is
not necessarily related to the extent of your disease - but more to do with
where the mesothelioma is situated.
The pleural area is very well supplied with nerve endings which can easily
be irritated or compressed by the tumour.
To maintain the quality of your life it is very important to be sure that you
obtain adequate help with pain control if this is a problem for you. It is very
rare for pain to be out of control and drugs are readily available which
need to be given at the correct level and combination for the individual.
You can ask for specialist help if you are having difficulties with pain.
Hospice and Macmillan Nurses are available in most areas and your GP
or hospital consultant can request help from them for you.

How can I help myself to stay as well as
possible?
There is quite a lot you can do . . .
You can help yourself by maintaining your general health as much as
possible i.e. a good balanced diet, preferably high calorie and rich in
protein. If your appetite is not good, it may be beneficial to supplement
your diet with specially balanced drinks which can be prescribed by your
GP - or ask to see your hospital or community dietitian for advice.
Exercise is essential to maintain good muscle tone. If your energy level is
low you can still do passive exercises of legs and ankles whilst sitting
down.
If you are lacking in energy or get breathless on exertion, save your
energy for the things you really want to do; make life as easy and
convenient as you possibly can - and don’t be too proud to accept help to
achieve this (other people like to feel needed and useful).
Complementary therapies such as relaxation, massage and aromatherapy
may be helpful in dealing with stress and anxiety.
What help is available if I need it?
Support is available from your GP and consultant. Many hospitals now
have Lung Nurse Specialists or Macmillan Nurses who you may meet
when the diagnosis is first made. Nursing help is available in the
community and your local Community Nursing Sister should possibly be
your first point of contact - preferably soon after the diagnosis. She can
give ongoing support and can arrange practical help as needed.
Domestic help, adaptations to your house and loan equipment e.g. bathing
aids can be provided via your local Social Services. They can also help
with day-to-day living problems e.g. washing, dressing and cooking. These
services are ‘means tested’ so it is important to claim benefits (see section
2) which will help cover any of these costs.

Who can I talk to?
Many people get emotional help from those friends and relatives closest to
them. This, however, may not be enough and carers also, may feel the
need for some support. Professional help and support is available in many
areas and your GP or Community Nurse may be the best people to advise
you about what is available locally - or you could phone one of the help
lines given on pages 23 and 24 of this booklet. Perhaps you have contact
with a minister who could help? Children and young people within your
family need to know what is happening too. Don’t feel they need to be
protected and be as open and honest with them as their age allows. Their
fear of what they imagine is often much worse than reality.
Please remember - ‘Coping’ does not mean the same as managing alone -
and people often want to help, even if it’s just by listening to your worries
or doing errands for you. Haven’t you ever felt good because you helped
someone when they needed it? Allow those around you to feel good too.
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