Introduction
Mesothelioma is a complex disease. It is preventable, it is incurable, it is difficult to diagnose and there are limited treatment options. Overall survival has remained unchanged over many years and is reported to be around 8-12 months. In countries that are resource limited, people are more likely to present with multiple symptoms related to advanced disease that has been undiagnosed for long periods and/or have symptoms of an aggressive and rapidly growing tumour.
Multidisciplinary teams
In Australia likely representing a more favourable than most developing countries, a cancer patient will have access to specialty clinicians working within a specialist multidisciplinary team or MDT. MDTs are usually disease specific, but mesothelioma commonly fits in to a Lung Cancer MDT.
Symptoms that lead to a diagnosis of Pleural Mesothelioma
The common presenting symptoms of people with MPM are:
- Shortness of breath
- Thoracic pain
- Weight loss, decreased appetite
- Fatigue
- Night sweats
When Mesothelioma is Diagnosed
A diagnosis of mesothelioma elicits distressing thoughts and worries for the patient and family as some are quite bluntly told something like: “You have a terminal disease, there is no cure, you have months to live so sort your affairs.”
Access to appropriate support from the time of diagnosis is vital. Support can be in the form of clinical information, emotional and psychological counselling, and hearing how others have or are navigating the mesothelioma dilemma.
During the time of trying to understand the real impact of a mesothelioma diagnosis, sharing concerns and feelings with a trusted partner, carer, family member or trusted somebody is important.
Some practitioners talk about placing attention on the three A’s:
- Attitude: stay positive but be realistic and surround yourself with positive people and support.
- Appetite: eat healthy, fresh and basic nutritional food. If struggling with this see a dietitian.
- Active: aim to maintain a good level of activity even during treatment. Doing a little exercise is better than doing nothing and when the patient least wants to exercise that is when it is most needed. A referral to an experienced Exercise Physiologist will be helpful.
The option to explore compensation
Depending on the legal entitlements of the country in which a person is exposed to asbestos some people who develop mesothelioma may be able to lodge a claim for compensation. Legal entitlements will vary between countries, and within countries, so it will be important to discuss this with appropriate governmental legislative legal officers.
Attending an asbestos victim support group can be beneficial to patients and their families as they can share information and emotional support from people who have been, or are in, the same situation.
Integrative Oncology and Supportive Care / Palliative Care
Integrative Oncology combines supportive and complimentary therapies like healthy nutrition, exercise physiology, mindfulness meditation, acupuncture, massage, dance, and palliative care with traditional medical therapy to provide ‘whole-person, patient-centred care’ that includes attention to psycho-social, emotional and spiritual concerns.
Medical Oncology
- Standard chemotherapy drugs for pleural mesothelioma are pemetrexed in combination with cisplatin or carboplatin.
- Immunotherapy is a type of drug treatment that uses the body’s own immune system to fight cancer. It is different to chemotherapy, which works by killing cancer cells. Different types of immunotherapy work in different ways. Some stimulate the immune system, so it works better against cancer. Others remove barriers that stop the immune system attacking the cancer.
- Clinical trials Clinical trials are research investigations in which people volunteer to test new treatments, interventions, or tests to prevent, detect, treat, or manage various diseases or medical conditions. This helps to determine if a new intervention works, if it is safe, and if it is better than the interventions that are already available.
Radiation Oncology
Radiotherapy is a cancer treatment that uses a controlled dose of radiation to kill or injure cancer cells, slow tumour growth, and hopefully cause tumour shrinkage, reduce symptoms and associated discomfort. The role of radiotherapy in treating mesothelioma is limited because mesothelioma cells are not highly sensitive to radioactive waves and therefore have a poor response to this treatment; and the dose required for effect is too toxic.
Surgery
- Video Assisted Thoracoscopy (VAT) (keyhole surgery)
Several small incisions (called port holes) are made in the side of the chest to allow a small camera and instruments to be passed into the chest. The surgery is performed via these port holes.
This procedure allows for optimal biopsy specimen, direct visualisation of disease present and corrective action such as pleurectomy and decortication.
- Thoracotomy (open surgery)
The chest cavity is entered via an incision on the back of the chest approximately 15-25 centimetres long. The ribs are spread to allow entry into the pleural space for partial pleurectomy and decortication (p/d). This procedure enables better access to debulk tumour that has been constricting lung expansion. Prior to VATs being perfected in the 1990’s open thoracotomy was standard mesothelioma surgery.
2.1 Talc pleurodesis
A talc pleurodesis is a procedure whereby sterile talc powder is instilled into the pleural space. The aim of this procedure is for the talc to cause inflammation between the two membranes that surround the lung and chest wall – the visceral and parietal pleura.
Quality of Life (QoL) and mental health
The QoL of patients, carers and families living with mesothelioma has focused on outcomes related to oncological treatment rather than the lived experience. Survivors of MPM, even those in good physical condition, need broader support.
The psychological impact of a mesothelioma diagnosis on the patient and family is understudied, however it is recognised that patients experience many negative emotions such as depression, fear, anxiety, hopelessness, guilt, shame, and rage.
It is vital that patients and families are offered psychological support, know how to reach out for support, and health professionals are alert to abnormal signs of loss and grief to avoid serious mental health problem.
Patient and Family Support
Patient and family support for anyone diagnosed with pleural mesothelioma is an essential part of care but sadly it is often the last consideration in health care funding. This should not be the case when a new disease is evolving, and services are being developed. Common cancer groups in some high-income countries have specialist trained nurses to provide care and support. This should be the case for mesothelioma as the symptom burden and need for medical and emotional support is high.
Overview of support organisations
Asbestos diseases support organisations grew out of a common concern for victims of ARDs and to take a united action to further the interests of victims to obtain compensation. These organisations included members from trade unions, lawyers, benefit advisors, occupational health and safety organisations and victims of ARDs and their families.
Typically, support organisations are community-based; comprising of a committed volunteer base of family members affected by ARDs and a small cohort of paid staff with a high level of collaboration with other organisations from other sectors. Their aim was to raise awareness of the injustice and suffering experienced by this group and to address the unmet needs for advice and support.
Key functions of support organisations provide:
- Services – free counselling and support services to those who have developed ARD and their families and the bereaved, those who have lost someone to ARDs.
- Resources – providing information on the latest medical and scientific research on ARDs and raising community awareness of the dangers associated with asbestos.
- Events – fundraising for medical research and support services for asbestos diseases patients and their families
- Advocacy / Campaigns – lobbying and providing advocacy in asbestos-related matters including medico/legal matters (Workers’ compensation/common law) and industrial and environmental hygiene.
