Life with a mesothelioma diagnosis can present many challenges. Because mesothelioma is often diagnosed at an advanced stage, treatment may be ongoing and it may be hard to accept that life won’t return to normal.
As management of symptoms and treatment for mesothelioma are likely to be ongoing, you will have regular check-ups to monitor your health. Everyone is different, so your doctor will decide how often you need check-ups, but it’s usually every 6–8 weeks.
During check-up appointments, your doctor will do a physical examination and may also arrange a CT scan to see how active the mesothelioma is. What other tests you have, and who you see and where, will depend on your health and the type of treatment you’ve had.
Between appointments, if you notice any change in your symptoms or you experience side effects from treatment, you should contact your doctor as soon as possible. You don’t have to wait until the next scheduled appointment.
Asking your doctor questions will help you make an informed choice about your treatment and care. You may want to include some of the questions below in your own list:
- What type of mesothelioma do I have?
- Has the mesothelioma spread? How fast is it growing?
- Are the latest tests and treatments for mesothelioma available in this hospital?
- Will a multidisciplinary team be involved in my care?
- Are there clinical guidelines for this type of cancer?
- What treatment do you recommend? What is the aim of the treatment?
- Are there other treatment choices for me? If not, why not?
- If I don’t have the treatment, what should I expect?
- How long do I have to make a decision?
- I’m thinking of getting a second opinion. Can you recommend anyone?
- How long will treatment take? Will I have to stay in hospital?
- Are there any out-of-pocket expenses not covered by Medicare or my private health cover? Can the cost be reduced if I can’t afford it?
- How will we know if the treatment is working?
- Are there any clinical trials or research studies I could join?
- What are the risks and possible side effects of each treatment?
- Will I have a lot of pain? What will be done about this?
- Can I work, drive and do my normal activities while having treatment?
- Will the treatment affect my sex life and fertility?
- Are there any complementary therapies that might help me?
- Who can I call if I’m worried between my appointments?
- Will others in my family also be at risk of mesothelioma?
- Can I claim compensation for the illness? Who do I contact about this?
For nearly every person with mesothelioma, the disease will come back even if it has initially responded well to treatment. This is known as disease progression or recurrence. How long this takes is different for each person.
When mesothelioma comes back, you and your doctor will need to consider what treatment to have and how to control symptoms. Treatment options will depend on the symptoms you are experiencing.
Palliative care can help reduce symptoms either alone or in combination with any of the following:
At some point, you may decide to stop treatment and focus on managing symptoms and maximising quality of life.
The role of hope
A diagnosis of advanced cancer does not mean giving up hope. People with mesothelioma often have many good months or years ahead of them and can continue to enjoy various aspects of life, including spending time with their loved ones.
As the disease progresses, the things that are hoped for tend to change. For example, a person may feel it is more important to focus on living comfortably for as long as possible or being able to celebrate a particular event. You can have these hopes while still acknowledging the reality of the situation.
Making a claim
Some people who develop mesothelioma due to asbestos exposure may be able to claim compensation. Your legal entitlements will depend on the state or territory in which you were exposed to asbestos. In some cases, the exposure may have occurred overseas.
Mesothelioma takes a long time to develop, so you may have been exposed to asbestos some 40 years ago. You might think it was a minor exposure, or you may not remember any exposure.
It is important to talk to a lawyer or law firm experienced in this area of work, as they often have information about how and where asbestos was used. An expert lawyer will also talk you through your life history and help you find out where the exposure took place. They will explain what compensation you may be able to claim and help make the process easy for you to understand.
Generally, a person diagnosed with mesothelioma has two different types of legal entitlements:
- a claim through the court, known as a common law claim
- a claim under a government compensation scheme, known as a statutory claim.
If you need help to find a lawyer, or want more information about legal services, call our information and support line on 13 11 20.
How much does legal action cost?
Legal costs generally depend on the amount of legal work required to resolve your case.
Most lawyers who specialise in asbestos-related compensation claims offer a 'no win, no fee' agreement. This means that the lawyers will only charge for legal services if they are successful in resolving your case, however terms and conditions do apply that you should be cautious of.
You are also entitled to claim a large portion of your legal costs from the defendants as part of your common law claim. The amount of costs awarded will depend on whether your case was resolved at mediation or at trial.
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Common law claims
A common law claim is a claim process through a court. The claim is brought against the party or parties who caused a person to be exposed to asbestos. These parties are known as the 'defendants'.
A common law claim begins by filing a formal court document known as an 'originating process'. The originating process must be lodged within your lifetime to protect your entitlement to compensation.
It may still be possible to bring a common law claim even if:
- you were exposed to asbestos many years ago
- you no longer work for the employer where you were exposed
- you have worked for many employers
- you were self-employed or a contractor
- your employer is no longer in business
- you are, or were, a smoker
- you were exposed to asbestos in another state or overseas
- you were not exposed in the workplace
- you were only briefly exposed to asbestos
- you were exposed to asbestos on more than one occasion
- you don’t know how you may have been exposed to asbestos.
If you’d like to make a claim, it’s important to speak with a lawyer as soon as possible after your diagnosis. If you’re too unwell to visit the lawyer in their office, they can visit you at home or in hospital to discuss the process and how it can be simplified for you and your family.
How long will a common law case take?
The majority of common law claims for mesothelioma are settled out of court through a process called mediation. This often happens within 3–6 months of the claim being lodged.
If your prognosis is poor, or you suddenly become very unwell, the process can be sped up to try to ensure that your common law claim is resolved in your lifetime. Only a few cases actually proceed to a court trial.
What if I die before my claim is settled?
Many people diagnosed with mesothelioma worry that their claim won’t be finalised before they die. The largest component of compensation is usually the general damages.
So long as you start a common law claim in your lifetime, then your entitlement to general damages is protected, and your estate would be able to continue with your claim if you die before your claim is finalised. In some circumstances, your family may also be entitled to dependency entitlements if you die because of the mesothelioma.
Some states and territories have special government compensation schemes for people who develop mesothelioma and other asbestos-related diseases during their employment. Victorians can access further information and make a claim through Work Safe Victoria.
Do I need a lawyer?
You, and sometimes your dependants, can lodge a statutory claim directly with the authority in your state or territory. However, most people with mesothelioma prefer to use a lawyer to arrange all their claims.
The laws around Australia vary and can be complex. Some people may be entitled to bring a common law claim instead of, or in addition to, a statutory claim. It is vital to consult an expert asbestos lawyer before applying for statutory benefits to ensure you aren’t excluded from also claiming common law compensation.
Advance care planning
It is worth seeking the advice of a lawyer to ensure your will is up to date and that your intentions for your estate are clear. You can legally appoint someone to make decisions for you if you lose the capacity to make your own decisions.
Depending on where you live, the documents for appointing this person may be known as an enduring power of attorney, enduring power of guardianship, or appointment of a medical treatment decision maker. You can also outline your treatment goals and preferences for future medical care in an advance care directive. These documents are part of advance care planning.
Cancer Council’s Pro Bono Program may be able to refer you to a lawyer for help with wills and advance care planning. Call 13 11 20 to find out what services are available in your area and whether you are eligible for this assistance.
Download our Understanding Mesothelioma booklet learn more.Download now
Expert content reviewers:
A/Prof Brian McCaughan, Cardiothoracic Surgeon, Chris O’Brien Lifehouse, NSW; Theodora Ahilas, Principal Lawyer, Maurice Blackburn Lawyers, NSW; Prof David Ball, Director, Lung Service, Peter MacCallum Cancer Centre, VIC; Shirley Bare, Consumer; Cassandra Dickens, Clinical Nurse Consultant, Cancer Care Coordinator – Thoracic Malignancies, Sunshine Coast University Hospital, QLD; Penny Jacomos, Social Worker, Asbestos Diseases Society of South Australia, SA; A/Prof Thomas John, Medical Oncologist, Senior Clinical Research Fellow, Austin Health, and Olivia Newton-John Cancer Research Institute, VIC; Victoria Keena, Executive Officer, Asbestos Diseases Research Institute, NSW; Penny Lefeuvre, Consumer; Jocelyn McLean, Mesothelioma Support Coordinator, Asbestos Diseases Research Institute, NSW; Prof David Morris, Peritonectomy Surgeon, St George Hospital and University of New South Wales, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council Western Australia; Prof Anna Nowak, Medical Oncologist, Sir Charles Gairdner Hospital, and Professor of Medicine, School of Medicine and Pharmacology, The University of Western Australia, WA; Prof Jennifer Philip, Palliative Care Specialist, St Vincent’s Hospital, Peter MacCallum Cancer Centre and Royal Melbourne Hospital, VIC; Nicole Taylor, Acting Lung Cancer and Mesothelioma Cancer Specialist Nurse, The Canberra Hospital, ACT.
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The information on this webpage was adapted from Understanding Mesothelioma - A guide for people with cancer, their families and friends (2019 edition). This webpage was last updated in August 2021.