Page last updated: November 2025
The information on this webpage was adapted from Understanding Mesothelioma - A guide for people with cancer, their families and friends (2025 edition). This webpage was last updated in November 2025.
Expert content reviewers:
This information was developed based on Australian and international clinical practice guidelines, and with the help of a range of health professionals and people affected by mesothelioma:
All updated content has been clinically reviewed by:
- A/Prof Anthony Linton, Medical Oncologist, Concord Cancer Centre and Concord Repatriation General Hospital, NSW
- Dr Naveed Alam, Thoracic Surgeon, St Vincent’s Private Hospital Melbourne and Monash Medical Centre, VIC
- Prof David Morris, Peritonectomy Surgeon, St George Hospital and UNSW, NSW.
This edition is based on the previous edition, which was reviewed by the following panel:
- A/Prof Anthony Linton (see above)
- Dr Naveed Alam, (see above)
- Donatella Arnoldo, Consumer
- Polly Baldwin, 13 11 20 Consultant, Cancer Council SA
- Dr Melvin (Wee Loong) Chin, Medical Oncologist, Sir Charles Gairdner Hospital and National Centre for Asbestos Related Diseases, WA
- Prof Kwun Fong, Thoracic and Sleep Physician and Director, UQ Thoracic Research Centre, The Prince Charles Hospital, and Professor of Medicine, The University of Queensland, QLD
- Vicki Hamilton OAM, Consumer and CEO, Asbestos Council of Victoria/ GARDS Inc., VIC
- Dr Susan Harden, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC
- Penny Jacomos, Social Worker, Asbestos Diseases Society of South Australia, SA
- Prof Brian Le, Director, Parkville Integrated Palliative Care Service, The Royal Melbourne Hospital and Peter MacCallum Cancer Centre, VIC;
- Lung Cancer Support Nurses, Lung Foundation Australia; Jocelyn McLean, Mesothelioma Support Coordinator, Asbestos Diseases Research Institute, NSW
- Prof David Morris (see above)
- Joanne Oates, Registered Occupational Therapist, Expert Witness in Dust Diseases, and Director, Evaluate, NSW
- Chris Sheppard and Adam Barlow, RMB Lawyers.
Life with a mesothelioma diagnosis can present many challenges. Take some time to adjust to the physical and emotional changes, and establish a daily routine that suits you and the symptoms you’re experiencing.
You are likely to feel a range of emotions about having mesothelioma, including fear, sadness, anxiety, anger, frustration, and loss and grief.
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.
Cancer Council can help you connect with other people with a similar diagnosis, and provide you with information about managing the emotional and practical impacts.
Get support
Ongoing care
As treatment and symptom management for mesothelioma are likely to be ongoing, you will have regular check-ups to monitor your health. Timing differs from person to person and depending on treatments.
Some people may see a doctor every three weeks, others 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 have had. At your check-ups, you will also be able to discuss how you are feeling and mention any concerns you may have.
If you live a long way from the hospital or treatment centre, you may be able to have some tests done by your GP or another specialist.
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.
Question checklist
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:
Diagnosis
- 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?
Treatment
- 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?
Side effects
- 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?
Support
- 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?
What if mesothelioma comes back?
For people with mesothelioma, the disease will come back even if it initially responds well to treatment. This is recurrence, relapse or disease progression. 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 available to you will depend on the symptoms you are experiencing, as well as your general health, and may include:
You may have these cancer treatments as part of palliative care. At some point, you may decide to stop treating the cancer and focus on managing symptoms and maximising your quality of life.
Your cancer care and palliative care teams can help you to understand your treatment options so that you can make well-informed decisions.
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 families and those who are important to them.
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 embrace these hopes while acknowledging the reality of the situation.
“I think more than anything else, I have learnt how important it is to have hope. Without hope there really is nothing.” Serafina
Advance care planning
Making plans for the future may help put your mind at ease and let you focus on treatment or living. Advance care planning lets you look at your future health and legal options and know that what you want is recorded in case it’s needed.
You can legally appoint someone to make decisions for you if you lose the ability (called capacity) to make your own decisions – for example, if you become too sick.
Depending on where you live, the documents for appointing this person may have different names, including an Enduring Power of Attorney, Enduring Power of Guardianship, or Appointment of Enduring Guardian.
You can also outline your treatment goals and what you want for your future medical care in an official document called an Advance Care Directive.
These documents are all part of advance care planning. It may be worth getting legal advice to be sure that your will is up to date and that what you want to happen to your estate (house, car, investments, etc.) is clear.
Cancer Council's Legal Support Program may be able to help refer some people to a lawyer for help with wills and advance care planning. These services may be free for people who can’t afford to pay.
Contact 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.
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. Ask your lawyer for a costs agreement, and ask them to explain what is involved.
Be aware that even under a “no win, no fee” agreement, if you:
- start a claim but decide to not continue with the action, you will usually need to pay any legal costs up to that point
- proceed but lose the court case, you will not need to pay your lawyer, but you may still need to pay court costs for yourself and possibly for the defendant
- are successful, a significant portion of your compensation might be absorbed by any costs that the defendant doesn’t have to pay.
Get financial and legal support
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 usually takes a long time to develop, so you may have been exposed to asbestos up to 50 years ago or even longer.
You might think it was a small exposure, or you may not remember coming into contact with asbestos. Talking to your friends and family can help you remember places where you may have been exposed to asbestos.
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 have developed mesothelioma as part of your job, you may be entitled to make a claim under a government-run workers compensation scheme in your state or territory.
As well as financial compensation, these schemes may sometimes cover certain medical tests or treatment.
Common law claims
A common law claim is brought against the party or parties (the people or organisations) who caused you to be exposed to asbestos. These are called 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.
This means that your estate will still be able to continue with your claim if you die before it is finalised.
If you’d like to make a claim, it’s important to speak with a lawyer experienced in asbestos-related compensation claims as soon as possible after your diagnosis.
If you’re too unwell to see a lawyer in their office, they may be able to visit you at home or in hospital to discuss the process and how it can be simplified for you and your family. It may still be possible to bring a common law claim even if you:
- were exposed to asbestos many years ago
- no longer work for the employer where you were exposed
- have worked for many employers
- were self-employed or a contractor at the time of exposure
- worked for an employer who is no longer in business
- are, or were, a smoker
- were exposed to asbestos in another state or overseas
- were not exposed in the workplace
- were only briefly exposed to asbestos
- were exposed to asbestos on more than one occasion
- don’t know how you may have been exposed to asbestos
How long will a common law case take?
Most common law claims for mesothelioma are settled out of court through a process called mediation. This can happen within a few months to a year of the claim being lodged.
If your prognosis is poor, or you suddenly become very unwell, the process may be sped up to try to ensure that your common law claim is resolved in your lifetime. Very 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. Your lawyer will let you know if this applies to you and your family
Statutory claims
Some states and territories have special government compensation schemes for people who develop mesothelioma and other asbestos-related diseases while at work.
Victorians can access further information and make a claim through Work Safe Victoria.
Do I need legal help?
You, and sometimes your dependants, can lodge a statutory claim directly with the authority in your state or territory. But most people with mesothelioma find it can be easier 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 as well as, a statutory claim.
It is vital to consult an expert asbestos lawyer before applying for statutory benefits to make sure that you aren’t excluded from also claiming common law compensation.
How can I find a lawyer?
Use the “find a lawyer” search on the Law Institute of Victoria website.
Mesothelioma legal claims are a specialised area. It’s important to talk to a lawyer or law firm experienced in this area, as they often have the appropriate information about how and where asbestos was used.
An experienced lawyer may reduce the time it takes to investigate a claim. They also understand what you are coping with and may work around medical appointments to try to make things less stressful for you.
Mesothelioma support organisations may also help you find a lawyer experienced in dealing with asbestos cases.
“When my husband was diagnosed with terminal mesothelioma, we were advised to apply for compensation. He reluctantly contacted lawyers, and they assured us we had a very strong case. My husband didn’t survive to win his case, but I did get good advice from our lawyers.” Sharon