MESOTHELIOMA – EXPLAINED
What is Mesothelioma
Malignant mesothelioma is a rare form of cancer that is associated with breathing in asbestos fibres/dust – it is not lung cancer. It is accepted malignant mesothelioma may be contracted by having very little exposure to asbestos fibres. The number of people being diagnosed with mesothelioma not caused by being exposed to asbestos fibre/dust in the workplace, is increasing. People who as children cuddled their fathers who had brought home asbestos dust on their clothes, women who washed asbestos dust impregnated work clothes, home renovators and mechanics, and their family members are just some of the people who are now being diagnosed with mesothelioma, many years after being exposed. – It is generally accepted, whilst it varies, mesothelioma takes anywhere from 20 to 60 years from first exposure to asbestos fibres/dust, to diagnosis, with the average being between 30 to 50 years.
Malignant mesothelioma is a form of cancer (only known to be caused by asbestos) that develops from within the cells of the mesothelium. The mesothelium is the protective lining that covers many of the human body’s internal organs. Mesothelium is a serous membrane that forms the lining of several body cavities: the pleura (thoracic cavity), peritoneum (abdominal cavity) and pericardium (heart sac). Mesothelioma develops on the mesothelium; rarely does it attack the actual organ.
About mesothelioma tumours
Mesothelioma normally presents as either solid individual tumours (imagine single hen’s eggs) or sheet tumours. Sheet tumours were explained to me by a surgeon: “Imagine you covered a wall in glue, then threw a big bag of rice at it, every grain of rice represent a single individual tumour, covering the wall or lining.”
Sheet tumours often cover a wide expanse of a mesothelium lining, and are therefore not a defined ‘dot’ or clearly outlined mass, this makes it hard to define on a scan until the tumour mass is quite advanced. Fluid build up is more likely to be associated with ‘sheet’ type tumour masses.
The three main forms of malignant mesothelioma
Malignant Pleural Mesothelioma is a malignant tumour that develops in the ‘pleura’, a two layered serous membrane that is the outer lining of the lung and that is attached to the internal chest wall – this form of malignant mesothelioma accounts for 85-90% of diagnosed mesothelioma cases in Australia. It is important to understand, malignant pleural mesothelioma is not classed as lung cancer – they are totally different cancers.
The premier USA not-for-profit mesothelioma patient focused organisation is the Mesothelioma Applied Research Foundation (MARF). The foundation’s Executive Director, Mary Hesdorffer, a Nurse Practitioner, is a mesothelioma expert. Here Mary talks about pleural mesothelioma.
Malignant Peritoneal Mesothelioma develops in the ‘peritoneum’, the serous membrane lining the cavity of the abdomen and covering the abdominal organs – malignant peritoneal mesothelioma accounts for less than 10% of diagnosed mesothelioma cases in Australia;
Mary Hesdorffer again, this time giving a short explanation of peritoneal mesothelioma.
Malignant Pericardial Mesothelioma develops in the ‘pericardium’, the membrane enclosing the heart, consisting of an outer fibrous layer and an inner double layer of serous membrane. Pericardial Mesothelioma is rarely diagnosed as the primary form of mesothelioma, more often than not it is a progression from malignant pleural mesothelioma.
- Malignant mesothelioma may also occur in the ovarian region (in women), and in the testes region (in men), this is known as Reproductive Mesothelioma, and may spread to other areas.
Mesothelioma is grouped into three cell types according to how the cells look when being examined under a microscope. These are the three types of mesothelioma cells:
- Epithelioid – the most common type, and thought in the main to respond best to standard available treatment
- Sarcomatoid – are the least common cell types and are considered to respond less to standard treatments
- Biphasic – Is a mixture of epthelioid and sarcomatoid cell types
In the wide world, it doesn’t seem to matter what cell type a person has. We have had people with sarcomatoid cell type mesothelioma [judged the worst type] survive for many years, and people with epithelioid cell type mesothelioma [judged the best type] pass away very quickly. As with most things to do with mesothelioma there is not definitive given.
Staging for mesothelioma in its infancy and is regarded by many as an indication only and should not be relied upon, or considered conclusive. It is only used when discussing malignant pleural mesothelioma, it is not normally used regarding peritoneal mesothelioma. The world’s leading body on mesothelioma, the International Mesothelioma Interest Group (iMig) has in recent years recommended using the TNM staging system, which they have adapted for staging malignant pleural mesothelioma.
The TNM System is the most commonly used cancer staging system, it describes:
- T = Tumour Identifies the size and position of the primary mesothelioma tumour
- N = Node Determining whether the mesothelioma cells have spread to nearby lymph nodes
- M = Metastasis Simply put, metastasis is a term used when determining whether the mesothelioma cells have spread to other parts of the body away from the primary (starting) tumour area
Basically it means Stage 1 is still at the relative early detection stage where the cancer is confined to the original area. Stage 4 is where it has progressed to other parts of the body and considered to be well advanced.
As discussed above, staging when first diagnosed can only give an indication of where the cancer is, it does not tell you how long the cancer has taken to get to this stage. Staging may help a specialist to decide what treatment to recommend, or whether to recommend a sufferer doesn’t have any treatment at all. Using staging to determine time frames only becomes relevant after a period of time as the cancer progresses (or doesn’t), and there becomes a known comparative factor.
Treatment for sufferers of malignant mesothelioma
All treatment for any form of malignant mesothelioma is considered to be palliative, there is no known cure for mesothelioma. The available therapy treatments and surgeries have the possibility of controlling the disease for a time, however so far none have so far been proven to eliminate the disease. Much of treatment focus is aimed at treating the symptoms with the aim to give a sufferer the chance of living a longer life, whilst maintaining a quality of life.
Treatments can be roughly split into two categories – ‘Therapies’ and ‘Surgeries’. Please go to the Mesothelioma Treatments – Therapies page and also to the Mesothelioma Treatments – Surgery page. You might also find reading the Mesothelioma – Living The Journey page revealing and useful.
First and foremost, not everyone who is diagnosed with any of the forms of mesothelioma suffer pain – it is quite common to hear of sufferers who go through their entire journey without suffering any significant short-term or long-term pain. This may be because they have no or little pain, or it may be because what pain they do have is well controlled. Please read more about pain control by going to the Mesothelioma Treatment – Therapies page.
Sufferers diagnosed with Pleural Mesothelioma often believe they are destined to being dependent on supplemental oxygen – this is often because they have visions of Bernie Banton lugging around an oxygen bottle with a plastic hose up his nose. Nothing could be further from the truth!
It is not a given if you are diagnosed with Malignant Pleural Mesothelioma (MPM) that you will end up on oxygen, if fact very few people diagnosed with MPM end up ever needing supplemental oxygen as a standard part of their treatment regime. Many people who are diagnosed with MPM also have underlying unrelated conditions that contribute to, or are the need for using part time or full time supplemental oxygen.
It is worthwhile remembering Pleural Mesothelioma is not Lung Cancer, it is a cancer of the linings that surround the lung. The lung itself is normally fully functional, it just has difficulty doing its’ job due to the restricted movement caused by the cancer and possible fluid build up in the pleural cavity (the space it needs to expand in and out)
Bernie Banton is a prime example, he needed constant supplemental oxygen because he had asbestosis which causes hardening of the lungs – when he was diagnosed with mesothelioma it was Peritoneal Mesothelioma (in the linings of the stomach) and had nothing to do with his lungs or their linings.
It is not uncommon for mesothelioma sufferers to end up having oxygen purely to alleviate shortage of breath caused by anxiety or another underlying condition.
The prognosis for malignant mesothelioma is poor, however the medical and scientific fraternity are dedicated to research in the hope of finding a cure. In doing so, they have also uncovered improvements in the delivery of existing treatments that are available, along with many hopeful new types of treatments being trialed to those suffering from this disease. Those treatments include, pleurodesis, chemotherapy, immunotherapy, clinical trials, radiotherapy, radical surgery and Supportive Care Options.
Important: Malignant mesothelioma does not mutate into asbestosis, or another asbestos related disease (ARD), a very small percentage of people who have malignant mesothelioma, end up being diagnosed with asbestosis. Likewise, a very small proportion of people who are diagnosed with asbestosis, have, or are subsequently diagnosed with malignant mesothelioma [such as Bernie Banton who was diagnosed with stomach Peritoneal Mesothelioma]. The only common element between malignant mesothelioma, asbestosis, and other asbestos related diseases (ARDs) is they are all caused by being exposed to asbestos fibre/dust.
Please go to the Mesothelioma – Living The Journey page to read more.
Supportive Care Options
Supportive Care Options is about maintaining or improving quality of life for sufferers of asbestos or dust related disease, at the same time allowing their loved ones to also have a quality of life during all stages of the disease. It is about working out what support and care options are available, and then putting in place strategies to help sufferers and their loved ones navigate the journey ahead in the best possible way.
Supportive Care Options should be discussed as soon as possible after diagnosis with your treating physician, hospital social worker or other care providers. You should also talk immediately with a specialist asbestos dust litigator regarding possible compensation.