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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, 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.
As management of symptoms 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. At your check-ups, you will also be able to discuss how you’re 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 arrange for some of the tests to be done by your GP or the specialist who referred you for major treatment.
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.
For nearly every person with mesothelioma, the disease will come back even if it has initially responded well to treatment. This is known as disease progression or recurrence. 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 will depend on the symptoms you are experiencing. Palliative care can help reduce symptoms either alone or in combination with any of the following:
- radiation therapy to reduce the size of the regrowth and pain
- further chemotherapy or immunotherapy
- further surgery
- participating in a clinical trial that is testing new drugs.
Palliative treatment for mesothelioma can be offered alone or in combination with surgery, chemotherapy and radiation therapy.
At some point, you may decide to stop treatment and focus on managing symptoms and maximising quality of life.
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 have these hopes while still acknowledging the reality of the situation.
This information is reviewed by
This information was last reviewed August 2019 by the following expert content reviewers: A/Prof Brian McCaughan, Cardiothoracic Surgeon, Chris O’Brien Lifehouse, NSW; Theodora Ahilas, Principal Lawyer, Maurice Blackburn Lawyers, NSW; Prof David Ball, Director, Lung Service, Peter MacCallum Cancer Centre, VIC; Shirley Bare, Consumer; Cassandra Dickens, Clinical Nurse Consultant, Cancer Care Coordinator – Thoracic Malignancies, Sunshine Coast University Hospital, QLD; Penny Jacomos, Social Worker, Asbestos Diseases Society of South Australia, SA; A/Prof Thomas John, Medical Oncologist, Senior Clinical Research Fellow, Austin Health, and Olivia Newton-John Cancer Research Institute, VIC; Victoria Keena, Executive Officer, Asbestos Diseases Research Institute, NSW; Penny Lefeuvre, Consumer; Jocelyn McLean, Mesothelioma Support Coordinator, Asbestos Diseases Research Institute, NSW; Prof David Morris, Peritonectomy Surgeon, St George Hospital and University of New South Wales, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council Western Australia; Prof Anna Nowak, Medical Oncologist, Sir Charles Gairdner Hospital, and Professor of Medicine, School of Medicine and Pharmacology, The University of Western Australia, WA; Prof Jennifer Philip, Palliative Care Specialist, St Vincent’s Hospital, Peter MacCallum Cancer Centre and Royal Melbourne Hospital, VIC; Nicole Taylor, Acting Lung Cancer and Mesothelioma Cancer Specialist Nurse, The Canberra Hospital, ACT.