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What It’s Really Like To Live With mesothelioma

What It’s Really Like To Live With mesothelioma

Living with mesothelioma


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 coping with.


You are likely to feel a range of emotions about having mesothelioma. Cancer Council’s Emotions and Cancer booklet offers strategies for coping with anxiety, fear, anger and other feelings. You may also have practical concerns, such as how to make a compensation claim for asbestos exposure (see pages 62–67) and what to do about work

(see Cancer Council’s Cancer, Work and You booklet).








Finding support

The organisations listed on page 72 can offer support or connect you with other people who have mesothelioma. You can also  call Cancer Council 13 11 20 or visit your local Cancer Council website (see back cover) for information about many aspects of living with cancer.



Looking after yourself

A mesothelioma diagnosis will cause physical and emotional strain. It’s important to try to look after your wellbeing as much as possible.


Nutrition – Healthy food can help you cope with treatment and side effects. A dietitian can help you manage special dietary needs or eating problems, and choose the best foods for your situation.


Call Cancer Council 13 11 20 for a free copy of the Nutrition  and Cancer booklet, or download a copy from your local Cancer Council website.


Staying active – Physical activity often helps to reduce tiredness, improve circulation and elevate mood. The amount and type of exercise you do depends on what you are used to, how you feel, and your doctor’s advice.


Cancer Council’s Exercise for People Living with Cancer booklet provides more information about the benefits of exercise, and outlines simple exercises that you may want to try.






Complementary therapies – These therapies are used with conventional medical treatments. You may have therapies such as massage, relaxation and acupuncture to increase your sense of control, decrease stress and anxiety, and improve your mood. Alternative therapies are used instead of conventional medical treatments. These therapies, such as coffee enemas and magnet therapy, can be harmful.


Let your doctor know about any therapies you are using or thinking about trying, as some may not be safe or evidence-based. For more information, call 13 11 20 for a free copy of the Understanding Complementary Therapies booklet, or download

it from your local Cancer Council website.



Relationships with others

Having cancer can affect your relationships with family and friends. This may be because cancer is stressful and tiring, or as a result of changes to your values, priorities or outlook on life.


Give yourself time to adjust to what’s happening, and do the same for others. People may deal with the cancer in different ways – for example, they may be overly positive, play down fears, or keep their distance. It may be helpful to discuss your feelings with each other.







Sexuality, intimacy and fertility

Cancer can affect your sexuality in physical and emotional ways. The impact of these changes depends on many factors, such as treatment and side effects, your self-confidence, and if you have a partner. Although sexual intercourse may not always be possible, closeness and sharing can still be part of your relationship.


If you are able to have sex, you may be advised to use contraception to protect your partner or avoid pregnancy for  a certain period of time. Your doctor will talk to you about the

precautions to take. They will also tell you if treatment will affect your fertility permanently or temporarily. If having children is important to you, talk to your doctor before starting treatment.



Ongoing management

As symptom management 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. If you live a long way from the hospital or treatment centre, you may be able to arrange for some of the tests to be done by your GP or the specialist who referred you for major treatment.






If you notice any change in your symptoms between appointments 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.



What happens when mesothelioma becomes active again?

For nearly every person with mesothelioma, the disease will become active again even if it has responded well to treatment. This is known as disease progression or recurrence.


When mesothelioma becomes active again, you and your doctor will need to consider what treatment is needed to try to regain control of the disease and provide relief from symptoms.


Treatment options will depend on the symptoms you are experiencing and may include:

  • radiotherapyto reduce the size of the regrowth and pain
  • further chemotherapy or second line chemotherapy
  • further surgery
  • participatingin a clinical trial to access new drugs being developed and tested.


Palliative treatment for mesothelioma can be offered alone or in combination with surgery, chemotherapy and radiotherapy. See page 43 for details. You may find it helpful to read the Cancer Council booklets Understanding Palliative Care and Living with Advanced Cancer.






At some point, you may decide to stop active treatment and focus on managing symptoms and maximising quality of life. The booklet Facing End of Life discusses the physical, emotional,

spiritual and practical aspects of living with end-stage cancer. Call 13 11 20 for a copy, or visit your local Cancer Council website.



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 many aspects  of life, including spending time with their families and other people who are important to them.


As the disease progresses, the things that are hoped for tend to change. For example, a person may now 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.



As hard as it was for us, my wife decided it was time to ‘rest’ and not struggle with needles, tests and hospital appointments. She said she would now prefer to spend time with those she loved, watch her garden grow and watch her grandchildren play.        Bill



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 your exposure to asbestos may have occurred some 40 years ago. You might think it was a trivial exposure, or you may not remember any exposure.

Talking to your friends and family can help to bring back memories of 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”.


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, with a lot of help, caring, understanding and good advice from our lawyers.                Sharon






Common law claim

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. As long as you start a common law claim during your lifetime, your estate will still be able to continue with your claim if you die before the claim is finalised.


You need to speak with a lawyer experienced in asbestos-related compensation claims 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.


It may still be possible to bring a common law claim even if:

  • youwere exposed to asbestos many years ago
  • youno longer work for the employer where you were exposed
  • youhave worked for many employers
  • youwere self-employed or a contractor
  • your employer is no longer in business
  • youare, or were, a smoker
  • youwere exposed to asbestos in another state or overseas
  • youwere not exposed in the workplace
  • youwere only briefly exposed to asbestos
  • youwere exposed to asbestos on more than one occasion
  • youdon’t know how you may have been exposed to asbest







How long will a common law case take?

The majority of common law claims for mesothelioma are  settled out of court 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. Your lawyer will let you know if this applies to you and your family.


How much does legal action cost?

Legal costs are generally dependent 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 get them to talk it through with you so you know what is involved. Be aware that even under a “no win, no fee” agreement, if you:

  • starta claim but decide to cease the action, you will usually need to pay any legal costs up to that point
  • proceedbut 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 p






Statutory claims

Some states and territories have special government compensation schemes for people who develop mesothelioma and other

asbestos-related diseases. These schemes usually apply only if you have been exposed to asbestos during your employment.


The authorities for Australia’s asbestos compensation schemes are:

  • ACT– WorkSafe ACT, call 02 6207 3000 or visit
  • NSW – DustDiseases Authority, also known as icare dust diseases care, call 02 8223 6600 or visit
  • NT – NT WorkSafe, call 1800 019 115 or visit
  • QLD – WorkCoverQueensland, call 1300 362 128 or visit
  • SA – ReturnToWorkSA,call 13 18 55 or visit com
  • TAS– WorkSafe Tasmania, call 1300 366 322 or visit
  • VIC – WorkSafeVictoria, call 1800 136 089 or visit
  • WA– Your employer’s insurer or if unknown, Insurance Commission of Western Australia, call 08 9264 3333

or visit

  • Commonwealth – Comcare,call 1300 366 979 or visit


Do I need a lawyer?

It is possible for you and sometimes your dependants to 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.


Using an expert asbestos lawyer will allow you to access all your entitlements while concentrating on your health and spending time on the things that are important to you.





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