MESOTHELIOMA – DIAGNOSIS
Being Diagnosed + Prognosis + More
Australia is blessed to have world leading doctors, physicians, clinicians, scientists and dedicated institutions researching and treating malignant mesothelioma and asbestos related lung cancer.
Malignant mesothelioma is mainly initially diagnosed in one of two areas of the body, in the chest cavity (pleural and/or pericardium), or in the stomach area (peritoneal) – it can be diagnosed in both areas, but this is rare. Many people wrongly believe, when talking about malignant pleural mesothelioma (MPM), that it is lung cancer. MPM is a cancer of the lining that surrounds the lung, it is not classed as lung cancer – they are totally different cancers. This is particularly important to understand and remember if you are on social media or are reading media reports – malignant mesothelioma, of any form, is not lung cancer.
If you are diagnosed with malignant mesothelioma it is imperative that a ‘specialist’ respiratory physician; and if applicable, an oncologist and thoracic surgeon conversant in asbestos related diseases be consulted to work out a pathway to navigate the journey ahead.
This page covers the following:
- Who Will Give A Diagnosis
- Diagnosing Malignant Mesothelioma
- If Diagnosed With Malignant Mesothelioma
- Asking For A Prognosis
- Mesothelioma Staging
- Mesothelioma Cell Types
- Things To Consider
Who Will Give A Diagnosis
As mentioned above it is important to get actual diagnosis, often this is harder than it may seem, due to many factors. People often put getting an actual diagnosis in the too hard basket, as I always said to people, “It doesn’t matter what you have, you need to get an actual diagnosis! After all how can you be treated if you don’t have a diagnosis? Do not at any stage accept it is too hard to be diagnosed – push the issue until you receive a conclusive diagnosis. Only then can you move forward, and commence the next stage of your journey – whatever that may entail.
If you have a switched on doctor (GP) who is conversant with asbestos related diseases you may be in luck. If not, just getting diagnosed could be quite arduous. it is important to have a clear pathway set up by your GP leading to a diagnosis. Normally it will involve having scans and being referred initially to either a respiratory, thoracic or gastroenterologist (abdomen) specialist – depending on your symptoms. Where possible, if asbestos is suspected of being involved, a specialist conversant with workplace dust diseases should be sought.
REMEMBER: When consulting your doctor, it is important to mention your history of asbestos exposure, otherwise the possibility of an asbestos related disease existing may be overlooked.
Diagnosing Malignant Mesothelioma
Diagnosing any form of mesothelioma is extremely difficult as the symptoms mimic the symptoms of many other more common diseases. Unless a GP or applicable specialist is used to diagnosing mesothelioma, they will often look, and test for the more common illnesses the symptoms may present. This is why it is important if a person has been exposed to asbestos at any point in their life, they should always tell (and re-enforce) this fact to their GP or treating physician.
In the case of Malignant Pleural (chest) Mesothelioma, often a patient presents to their local doctor complaining of shortness of breath and/or chest pain – often this pain will be coupled to sharp ‘nerve’ type pain just below the shoulder blade in the back ; or in the case of Malignant Peritoneal (stomach) Mesothelioma, it could be an extended uncomfortable and/or painful stomach, or an unexplained lump.
It is common an X-ray or hi-resolution CT scan will be taken in the first instance – if mesothelioma is present, unexplained shadows or other indications may show up revealing either an excessive fluid build up in the pleural cavity (this is often referred to as pleural effusion), or the suggestion of cancerous tumour activity. Remember though, these symptoms may be explained by a multitude of other causes or diseases, they are not exclusive to mesothelioma.
Following this, a biopsy is normally arranged, this is commonly done by keyhole surgery. Keyhole surgery being performed in the chest area is known as VATS (Video Assisted Thoracoscopic Surgery). In the case of pleural activity where fluid build up is evident, a biopsy is often taken in conjunction with doing a pleurodesis – this will be performed by a thoracic surgeon. When keyhole surgery is used to take a biopsy from the abdomen, the procedure is called a laparoscopy. The specialist may elect to to do a less evasive needle biopsy, dependent on the what is needed, or possible due to the sufferers overall health or condition.
A biopsy is considered the only conclusive way of diagnosing malignant mesothelioma.
In some circumstances, a biopsy is not able to be undertaken, for example if the patient has severe heart problems or is considered too frail. In this case, the diagnosis may be made clinically using progressive X-rays and High Resolution CT scans and/or by testing pleural fluid.
If Diagnosed With Malignant Mesothelioma
It is imperative that a ‘specialist’ respiratory physician, oncologist, and/or thoracic surgeon (whichever is relevant) in malignant mesothelioma be consulted, and their advice followed.
The performing of a talc pleurodesis (malignant pleural mesothelioma only); chemotherapy; immunotherapy; clinical trials; radiotherapy; radical surgery and palliative care are some of the treatment options that can be considered. The option of not having any treatment at all is also something that may be considered. These treatment options are discussed in detail in the mesothelioma treatment therapies, surgeries, clinical trials and Supportive Care Option pages. The specialist oncologist or specialist respiratory physician will provide the relevant advice about such options and discuss the pros and cons of undertaking such treatment, or having no treatment at all.
It is important to remember that individual circumstances need to be assessed when considering treatment options. Treatment for one person suffering mesothelioma may not be appropriate for another person.
Asking For A Prognosis
If you or a loved one one is diagnosed with a malignant mesothelioma cancer, perhaps the very first question you will ask, or want to ask, is, “How long?”
It is a very simple question that no one can answer regardless of their expertise in treating or dealing with mesothelioma. This is due to the fact the disease does not react, or progress in the same way in any two people; neither can it be predicted how the disease in any particular person will react to whatever treatments are given. Chemotherapy, for example may work exceedingly well for one person, and significantly improve quality and length of life, but not work at all for another. Doctors can only talk averages, but we know when it comes to mesothelioma, no one is average!
If you get told you or a loved one has a certain time to live, take it for what it is – a guesstimate – nothing more! You may be told you only have months to live (which is the normal thing doctors will say), and then live for many years, on the other hand they could be right. Because of this uncertainty, you should not delay making decisions about things that could be considered important, it is important to chart a path forward.
Staging will usually be mentioned at some point and is only used when discussing malignant pleural mesothelioma, it is not normally used regarding peritoneal mesothelioma. 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. Read more about mesothelioma ‘staging’ in the Mesothelioma – Explained page.
It is only in recent years doctors have started discussing ‘Cell’ types when diagnosing mesothelioma. Mesothelioma is grouped into three cell types according to how the cells look when being examined under a microscope. In the real 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 due with mesothelioma there is no given! To read more about mesothelioma cell types, go to the Mesothelioma – Explained page.
Things To Consider
If you or a loved one is diagnosed with malignant mesothelioma:
- Try not to take it to heart when a doctor gives you a time frame – they will have only made a guess after you have pushed them to do so. It may be close, or it may be meaningless!
- Staging, may give a guide as to where the disease is at, and may be good for comparative purposes down the track to help measure progression or lack of it. But it should not be used as a definitive indicator when trying to get a handle on a life time frame.
- Knowing what mesothelioma cell type you, or a loved one has may be of interest – but should it be used to help you make decisions? The bottom line is, it doesn’t seem to make much difference.
- Do not put off doing things that are important to you.
- Involve your family and friends in your life.
- Please ensure you read the Mesothelioma – Living The Journey page.
There is only one thing certain when it comes to mesothelioma:
There is NO CERTAINTY!
Supportive Care Options
Supportive Care Options is about maintaining or improving quality of life for sufferers of asbestos 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.