LIVING WITH MESOTHELIOMA

If you or a loved one has mesothelioma, you are among the thousands of people living with the disease. Mesothelioma affects people living with the disease and their loved ones in a variety of ways. This page takes a closer look at the physical, emotional and social impacts of the disease.

The incidence of mesothelioma, a fatal cancer usually associated with asbestos exposure, is increasing worldwide. It will increase for some years to come, particularly in developing countries where asbestos use is largely unregulated.

Symptoms. The physical symptoms of the disease include pain, breathlessness, fatigue, coughing, disturbed sleep, loss of appetite and sweating. Most patients experience pain and breathlessness. That may limit their ability to function and interact socially. Coughing, appetite loss, sleep disturbance and sweating also are significant issues. Many patients have multiple physical symptoms.

Disease progress and treatment. Physicians observe a huge variability in the course of the disease, from a slowly progressive disease to a more rapidly advancing, aggressive illness. Because the symptoms of mesothelioma are common to many illnesses and mesothelioma is relatively rare, the disease often isn’t diagnosed until it has reached an advanced stage.

Mesothelioma remains largely resistant to treatment, despite advances in chemotherapy, radiotherapy and surgical approaches, according to an article in the European Journal of Cancer Care, which summarized 13 recent studies.  The median survival rates vary from six to 18 months, according to the American Thoracic Society and the British Thoracic Society. A small number of patients may live three years or more.

As the disease progresses, medical intervention such as the drainage of pleural fluid, chemotherapy, surgery and admission to a hospital or hospice is often a necessity to control the symptoms, even though such interventions can cause distress to patients.

Toll on patients, families. Besides physical symptoms, mesothelioma exacts an emotional toll on patients and their families, including anxiety, depression and isolation. Patients and family members often feel shock, disbelief and numbness in reaction to the initial diagnosis. Most patients reported few health concerns before being diagnosed with mesothelioma, making the diagnosis all the more shocking. They feel a sense of isolation and anger at their deteriorating physical condition, their inability to function and the perceived hopelessness of the situation.

Because often mesothelioma victims can no longer do their jobs, they may feel a loss of identity and have feelings of anger and guilt at having developed the disease. Many patients experience anxiety and fear about what will happen next in terms of additional symptoms and the process of dying. Patients and caregivers often feel a lack of support in coping with the psychological impacts of the disease and end of life care issues.

The disease profoundly affects the family members and loved ones of those with mesothelioma. Patients and family members experience changes in identity and social relationships. The family dynamic alters. Often, the spouse or another family member assumes a primary role as caregiver. This burden puts stress on the caregiver’s physical and emotional well-being, particularly when he or she cannot relieve a loved one’s pain because of its severity. Caregivers may struggle to keep up with household chores and experience sleeplessness, tiredness and poor nutrition. They also often feel as if they’re not getting enough information and guidance from doctors and health care professionals.

More research needed. More research is needed on the impact of mesothelioma on patients and families coping with the disease, but this information offers some important insights about what to expect. If you or a family member has recently been diagnosed with mesothelioma, it’s important that you surround yourself with the support and resources to live with the disease.

For more information, or to purchase the full article. (link to:  http://www3.interscience.wiley.com/journal/122649890/abstract)