Living with pleural mesothelioma

Learn how to cope with the realities of living with pleural mesothelioma, including ongoing management, recurrence, and emotional well-being.

Learn more about:

• Overview
• Dealing with feelings of sadness
• Looking after yourself
• Ongoing management
• What if mesothelioma comes back?
• The role of hope
• Advance care planning

Overview

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.

For more this, see Emotions and cancer, and information about compensation claims for asbestos exposure.

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. For 24-hour crisis support, call Lifeline on 13 11 14.

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 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.

Ongoing management

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.

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 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.

For more on this, see Living with advanced cancer and Cancer care and your rights.

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