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  • Living with pleural mesothelioma

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    Life between treatments for pleural mesothelioma can present its own 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.

    Several organisations can offer support at this time. Contact Cancer Council 13 11 20, Lung Foundation Australia on 1800 654 301 or Asbestos Diseases Research Institute (ADRI) on
    (02) 9767 9800 for information about the emotional and practical aspects of living with cancer. They can also connect you with other people who have pleural mesothelioma.

    Dealing with feelings of sadness

    People with pleural mesothelioma may feel sad or depressed. It is okay to feel you’re not coping all the time. But if the sadness lasts longer than two weeks, you’re having trouble sleeping or not enjoying things you usually like doing, tell your GP. Counselling and/or medication may help.

    The organisation beyondblue has information about coping with depression and anxiety. To order a fact sheet call 1300 22 4636 or go to beyondblue.org.au. You can also connect with a counsellor over the phone, online or by email.

    Cancer Council SA also runs a free counselling program for people affected by cancer and their families. Call Cancer Council 13 11 20 for more information.

    Ongoing management

    As managing symptoms and treatment for pleural mesothelioma is 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 six to eight weeks.

    During follow-up appointments you will have a physical examination and may have a CT scan to check how active the pleural 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 centre where you had treatment, you may be able to arrange for some of the follow-up 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 if my pleural mesothelioma becomes active again?

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

    When pleural 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:

    Information last reviewed June 2015 by: Theodora Ahilas, Principal, Maurice Blackburn Lawyers, NSW; Shirley Bare, Support Group Facilitator, Asbestoswise, VIC; Geoffrey Dickin, Consumer; Victoria Keena, Executive Officer, Asbestos Diseases Research Institute, NSW; Angela Kyttaridis, Social Worker, Concord Repatriation General Hospital, NSW; Jocelyn McLean, Mesothelioma Support Coordinator, Asbestos Diseases Research Institute, NSW; Kirsten Mooney, Thoracic Cancer Nurse Coordinator, WA Cancer and Palliative Care Network, Department of Health, WA; Clin/Prof AW Musk AM, Schools of Population Health and Medicine, University of Western Australia, and Physician, Sir Charles Gairdner Hospital, Nedlands, WA; Dr Andrew Penman AM, Consultant, Asbestos Diseases Research Institute, NSW; Tanya Segelov, Partner, Turner Freeman Lawyers, NSW; Roswitha Stegmann, 13 11 20 Consultant, Cancer Council Western Australia, WA; Dr Mo Mo Tin, Staff Specialist Radiation Oncology, Chris O’Brien Lifehouse, NSW; and Prof Nico van Zandwijk, Director of the Asbestos Diseases Research Institute and Professor of Medicine, University of Sydney, NSW.

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