Living with pleural mesothelioma

Monday 1 June, 2015

Download PDF Order FREE booklet

 On this page: Dealing with feelings of sadness | Ongoing management | What if pleural mesothelioma becomes active again?


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. Call Cancer Council 13 11 20, Lung Foundation Australia on 1800 654 301 or Asbestos Diseases Research Institute (ADRI) on 1300 237 400 for information about the emotional and practical aspects of living with cancer. They can also connect you with other people who have had pleural mesothelioma.

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 been diagnosed with pleural mesothelioma.

Talk to your GP, as counselling or medication – even for a short time – may help. Some people are able to get a Medicare rebate for sessions with a psychologist. Ask your doctor if you are eligible. Your local Cancer Council may also run a counselling program.

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.

Ongoing management

As managing symptoms and treatment for pleural 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 follow-up appointments, you will have a physical examination and may also 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.

Palliative and supportive care for pleural mesothelioma can be offered alone or in combination with surgery, chemotherapy and radiotherapy. See palliative treatment for more details. You can also call Cancer Council 13 11 20 and ask for copies of Understanding Palliative Care and Living with Advanced Cancer.

What if 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:

  • radiotherapy to reduce the size of the regrowth and pain
  • further chemotherapy or second line chemotherapy
  • participating in a clinical trial to access new drugs being developed and tested.
"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

Reviewed: 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.

Updated: 01 Jun, 2015