Living with pleural mesothelioma
Life with a pleural 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.
Learn more about:
- Dealing with feelings of sadness
- Looking after yourself
- Ongoing management
- What if mesothelioma comes back?
- The role of hope
- Advance care planning
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.
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 see Managing cancer side effects, Exercise after a cancer diagnosis, Complementary therapies, Emotions and cancer, Nutrition and cancer, Sexuality, intimacy and cancer, Fertility and cancer, and Living well after cancer.
Alternative therapies are therapies used instead of conventional medical treatments. These are unlikely to be scientifically tested, may prevent successful treatment of the cancer and can be harmful. Cancer Council does not recommend the use of alternative therapies as a cancer treatment.
As treatment and symptom management for pleural 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 quality of life. Your cancer care and palliative care teams can help you understand your treatment options so 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 an 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 can refer you to a lawyer for help with wills and advance care planning. These services are usually 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.
Dr Anthony Linton, Medical Oncologist, Concord Cancer Centre and Concord Repatriation General Hospital, NSW; Dr Naveed Alam, Thoracic Surgeon, St Vincent’s Hospital Melbourne and Monash Medical Centre, VIC; 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, Peritonectomy Surgeon, St George Hospital and UNSW, NSW; Joanne Oates, Registered Occupational Therapist, Expert Witness in Dust Diseases, and Director, Evaluate, NSW; Chris Sheppard and Adam Barlow, RMB Lawyers.
View the Cancer Council NSW editorial policy.
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