Mentioning asbestos exposure
No one is immune from contracting an asbestos related disease, particularly mesothelioma asbestos cancer, which which can be contracted as a result of extremely low levels of exposure to asbestos fibres/dust. If you are feeling unwell, It is particularly important to tell your medical practitioner If you have been exposed to, or think you may have been exposed to asbestos fibres/dust. This is particularly important if you have a shortness of breath or a sudden onset of shortness of breath, a persistent cough, ache or swelling in the chest, in the back around the lower shoulder blade area, stomach or groin that cannot be explained by everyday ailments. If you don’t, they may not think to look for, or completely overlook the possibility you may have an asbestos related disease.
Asbestos on the lung?
It is important to be given a definitive diagnosis. Many people are either told, or believe they have a diagnosis, or a condition called ‘asbestos on the lung‘ – the problem is there is no actual disease called ‘asbestos on the lung’!
‘Asbestos on the lung‘ appears to be a very loose term either used by a doctor, or mistakenly fixated on by a patient, to describe anything from almost inconsequential slight scaring of either the lungs, or the lining that surrounds the lungs, to the other extreme, describing the terminal cancer, malignant mesothelioma. It really is important to get a definitive diagnosis, and be told exactly which asbestos related disease you do have. Being told you have ‘asbestos on the lung’ could mean very little, or it could mean heaps!
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.
If you are suspected of having a form of malignant mesothelioma asbestos cancer you will find comprehensive information in the dedicated Mesothelioma section.
*Note: For those diagnosed, or have a loved one diagnosed with malignant mesothelioma the information below is also contained within the page: Mesothelioma – Living The Journey
Who will be in charge
When a person is diagnosed with an asbestos related disease it is really important to know, or establish who is going to be in charge of the medical side of the journey. It is important to have a clearly defined treating team hierarchy looking after the medical care journey. This normally would be your General Practitioner (GP) plus either the Respiratory or Gastroenterologist (abdomen) Specialist, and/or treating Specialist Oncologist. We are blessed to have many of the world’s most highly rated clinicians and researchers specialising in malignant mesothelioma and other asbestos related diseases, spread across Australia’s capital and main regional cities.
Multi-disciplinary Team (MDT)
One of the first things you will hear about is something called a called a Multi-disciplinary Team (MDT). What is it? Basically it is a team of medical and allied care professionals who come together as one to discuss and look after a sufferers medical and care journey – the diagnosis will determine who needs to be in the MDT. The important thing is that the lead treating specialist has access to, or is part of a MDT. This is somewhere they can discuss, and ‘chew the fat’ about the sufferer’s illness, particular symptoms and what treatments and care may aid the sufferer. Most major hospitals (whether public or private and health regions have MDTs treating specialists are either a member of, or have access to join. I believe one of the most important questions you should ask appointed or intended specialist, is whether or not they are part of a MDT, and who does it consist of. Often MDTs will meet once a week or on appointed days, so don’t be surprised if you are told you will find out more in a week’s time!
Where do you find the right specialist?
Thankfully, in Australia, we have many world acknowledged specialists in the fields of malignant mesothelioma and other asbestos related diseases. A lot will depend if the diagnosis is cancer related (malignant mesothelioma or asbestos related lung cancer) or non-cancerous related (pleural plagues, asbestosis or asbestos related pleural disease). If it is cancer related then often you will need respiratory, thoracic (surgeon), oncology and possibly radiotherapy or gastrointestinal surgery/oncology specialists, dependent on diagnosis. If non-cancerous, then respiratory and possibly thoracic (surgeon) specialists will be needed. Again, depending on the diagnosis, supportive care specialists in pain control and palliative care may be needed.
Most capital cities and major regional health districts have hospitals and health centres with experts in their respective fields and have MDTs. With the event of more wide spread use of telehealth and video conferencing, the tyranny of distance is becoming less of an issue. If you are in a capital city, do your homework and see ‘who is who in the zoo’, so as to speak. If you are in regional areas, look at your main centres and look particularly at whether they have respiratory and/or cancer/oncology specialist centres.
Choosing medical specialists
My personal experience and belief is that from the outset, It is really important you have, or engage, not only specialists in their field, but also importantly, who you can relate to, and you feel they are batting for you. However, for some people, the only importance is getting the best specialist possible – regardless of ‘bedside manner’ or relatability. This is very much a subjective judgement call.
When engaging specialist medical professionals read up on them, ask questions – do your own due diligence. Importantly, do they have the necessary expertise and experience in the relevant field in relation to your diagnosis? Trust your gut feeling – are they someone you feel will look after your best interest, in the manner you would like to be looked after?
Some questions you may like to ask yourself, or find answers to:
- Is the specialist well credentialed and has experience in treating patients with your diagnosis?
- Do you feel the specialist will:
- Give you the necessary time, or do they constantly look at their watch, and/or are dismissive?
- Look you straight in the eye when answering your myriad of ongoing questions?
- Be there for you through thick and thin?
- Show respect towards you?
- Will show empathy, compassion and be holistic when dealing with you?
Summing up, in my opinion, if possible your treating specialist should not only be well credentialed and experienced with treating your diagnosed asbestos related disease, but also make you feel comfortable, give you time and answer any questions you throw up. No question is too dumb……. they are the experts after all. But of course, you may think, or feel very differently from me!
This is all about doing your homework and having ‘no regrets‘. Don’t be afraid to make change, if you feel it is necessary, or the right thing to do…… this is after all your journey!