Types of cancer
Living with mesothelioma
Living with mesothelioma means adjusting physically, emotionally, and socially, maintaining your wellbeing through nutrition, exercise, and support.
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Sources and references 
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 13 11 20 can help you connect with other people with a similar diagnosis, and provide you with information about managing the emotional and practical impacts.
Dealing with feelings of sadness
If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression. This is quite common among people who have had cancer.
Talk to your GP, because counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. Cancer Council may also run a counselling program in your area.
For information about coping with depression and anxiety, call Beyond Blue on 1300 22 4636 or visit the Beyond Blue website. For 24-hour crisis support, call Lifeline 13 11 14 or visit the Lifeline website.
Looking after yourself
Cancer can cause physical and emotional strain, so it’s important to look after your wellbeing. Cancer Council has free booklets and programs to help you during and after treatment. Call 13 11 20 to find out more, or visit your local Cancer Council website.
Eating well – Healthy food can help you cope with treatment and side effects. A dietitian can explain how to manage any special dietary needs or eating problems and choose the best foods for your situation.
Staying active – Physical activity can reduce tiredness, improve circulation and lift mood. The right exercise for you depends on what you are used to, how you feel, and your doctor’s advice.
Complementary therapies - are designed to be used alongside conventional medical treatments. Therapies such as massage, relaxation and acupuncture can increase your sense of control, decrease stress and anxiety, and improve your mood. Let your doctor know about any therapies you are using or thinking about trying, as some may not be safe or evidence-based.
Work and money – Cancer can change your financial situation, especially if you have extra medical expenses or need to stop working. Getting professional financial advice and talking to your employer can give you peace of mind. You can also check whether any financial assistance is available to you by asking a social worker at your hospital or treatment centre or calling Cancer Council 13 11 20.
Relationships – Having cancer can affect your relationships with family, friends and colleagues in different ways. Cancer is stressful, tiring and upsetting, and this may strain relationships. The experience of cancer may also result in positive changes to your values, priorities or outlook on life. Give yourself time to adjust to what’s happening, and do the same for those around you. It may help to discuss your feelings with each other.
Sex life – Cancer can affect your sex life 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.
Contraception and fertility – If you can have sex, you may need to use certain types of contraception to protect your partner or avoid pregnancy for a time. Your doctor will explain what precautions to take. They will also tell you if treatment will affect your fertility permanently or temporarily. If having children is important to you, discuss the options with your doctor before starting treatment.
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 3 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. You don’t have to wait until the next scheduled appointment.
What if mesothelioma comes back?
For people with mesothelioma, the disease will come back even if it responds well to initial treatment. This is called recurrence, relapse or disease progression. How long this takes is different for everyone.
When mesothelioma comes back, you and your doctor will need to consider what treatment to use and how to control symptoms. Treatment options available to you will depend on symptoms you are experiencing, as well as your general health, and may include:
- radiation therapy to reduce the size of the regrowth and pain
- more chemotherapy or immunotherapy
- further surgery
- participating in a clinical trial that is testing new drugs.
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 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 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 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. Call 13 11 20 to find out what services are available in your area and whether you are eligible for free legal assistance.
Caring for someone with mesotheolioma
You may be reading this booklet because you are caring for someone with mesothelioma. What this means for you will vary depending on the situation. Being a carer can bring a sense of satisfaction, but it can also be challenging and stressful. It is important to look after your own physical and emotional wellbeing. Give yourself some time out and share your concerns with somebody neutral such as a counsellor or your doctor, or try calling Cancer Council 13 11 20. There is a wide range of support available to help you with the practical and emotional aspects of your caring role.
Support services – Support services such as Meals on Wheels, home help or visiting nurses can help you in your caring role. You can find local services, as well as information and resources, through the Carer Gateway. Call 1800 422 737 or visit the Carer Gateway website.
Support groups and programs – Many cancer support groups and cancer education programs are open to carers as well as to people with cancer. Support groups and programs offer the chance to share experiences and ways of coping.
Carers Australia – Carers Australia provides information and advocacy for carers. Visit the Careres Australia website.
Cancer Council – You can call Cancer Council 13 11 20 or visit your local Cancer Council website to find out more about carers’ services.
Seeking Support
A cancer diagnosis can affect every aspect of your life. You will probably experience a range of emotions – fear, sadness, anxiety, anger and frustration are all common reactions. Cancer also often creates practical and financial issues.
There are many sources of support and information to help you, your family and carers navigate all stages of the cancer experience, including:
- information about mesothelioma and its treatment
- access to benefits and programs to ease the financial impact of cancer treatment
- home care services, such as Meals on Wheels, visiting nurses and home help
- aids and appliances
- mesothelioma support groups and programs
- counselling services.
The availability of services may vary depending on where you live, and some services will be free but others might have a cost.
To find good sources of support and information, you can talk to the social worker or nurse at your hospital or treatment centre, or get in touch with Cancer Council 13 11 20.
My family members don’t really understand what it’s like to have cancer thrown at you, but in my support group, I don’t feel like I have to explain.”
Sam
Support from Cancer Council
Cancer Council offers a range of services to support people affected by cancer, their families and friends. Services may vary by location.
Cancer Council 13 11 20
Our experienced health professionals will answer any questions you have about your situation and link you to local services.
Legal and financial support
If you need advice on legal or financial issues, we may be able to refer you to qualified professionals. These services are free for people who can’t afford to pay. Financial assistance may also be available. To find out more, call Cancer Council 13 11 20.
Peer support services
You might find it helpful to share your thoughts and experiences with other people affected by cancer. Cancer Council can link you with individuals or support groups by phone, in person, or online. Call 13 11 20 or visit the Cancer Council Online Community website.
Information resources
Cancer Council produces booklets and fact sheets on more than 40 types of cancer, as well as treatments, emotional and practical issues, and recovery. Call 13 11 20 or visit your local Cancer Council website.
Practical help
Cancer Council can help you find services or offer guidance to manage the practical impacts of cancer. This may include helping you access accommodation and transport services.
Mesothelioma support in Australia
New South Wales
- Asbestos Diseases Foundation of Australia (ADFA) 1800 006 196
- Asbestos and Dust Diseases Research Institute (ADDRI) 02 9767 9800
Queensland
- Asbestosis and Mesothelioma Association of Australia (AMAA) 1800 017 758
- Asbestos Disease Support Society (ADSS) 1800 776 412
South Australia
- Asbestos Diseases Society of South Australia (ADSSA) 1800 157 540 or 08 8241 7297
- Asbestos Victims Association of SA (AVA) 08 8212 6008
Tasmania
Victoria
- Asbestos Council of Victoria (ACV)/Gippsland Asbestos Related Diseases Support (GARDS)>
0407 274 173
Western Australia
- Asbestos Diseases Society of Australia (ADSA) 08 9344 4077
- Reflections 1800 031 731
Other useful websites
You can find many useful resources online, but not all websites are reliable. These websites are good sources of support and information.
Australian
- Cancer Council Online Community
- Cancer Council podcasts
- Guides to Best Cancer Care
- Advance Care Planning Australia
- Asbestos Safety and Eradication Agency
- Australian Mesothelioma Registry
- Cancer Australia
- Carer Gateway
- Healthdirect Australia
- My Aged Care
- Palliative Care Australia
- Patient travel assistance schemes
- Services Australia
- The Australian Asbestos Network
- Young Carers Network
International
Question checklist
Asking your doctor questions will help you make an informed choice. 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?
Sources and references
Understanding Mesothelioma - A guide for people with cancer, their families and friends
Acknowledgments
This edition has been developed by Cancer Council NSW on behalf of all other state and territory Cancer Councils as part of a National Cancer Information Subcommittee initiative.
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.
We also thank the health professionals, consumers and editorial teams who worked on previous editions of this title. Previous editions of this title and related resources were funded in part by the Heads of Asbestos Coordination Authorities and a donation from Lyall Watts.
Mesothelioma
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Guide to best cancer care
This mesothelioma guide explains the standard of high-quality cancer care that all Australians can expect, from diagnosis, to treatment, recovery, and living with cancer.