Mesothelioma Patients Find Strength In Online Communities

Malignant Mesothelioma is one of the rarest forms of cancer in the United States. Patients must often deal with physical limitations, stress, lack of treatment options and feelings of isolation. Recent studies suggest that malignant mesothelioma patients and their families can find strength and a renewed spirit by joining online communities that welcome interaction.

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Malignant mesothelioma is a cancer that affects the tissue lining of major organs. The most common is lung related (pleural mesothelioma) and in most cases, can be traced back to asbestos exposure in the past. Inhaling asbestos products allows the particles to travel through small air passages and settle into the lining of the lungs causing inflammation. Though it may take 25-30 years to develop, these particles can also change the DNA of cells in the lining, leading to mesothelioma. Asbestos products that are swallowed can settle into the lining of the stomach and cause peritoneal mesothelioma.

During the 1970s and 1980s, the Environmental Protection Agency banned the use and distribution of asbestos-containing products including insulation, wall patching compounds, artificial fireplace embers, flooring felt, commercial paper and many other construction materials that were commonly used to build businesses and homes. Some mesothelioma patients who believe their cancer was caused by asbestos-containing products are now seeking legal recourse.

In the latest Journal of Psychosocial Oncology,  lecturer Desiree Kozlowski writes about the benefit of joining an online community devoted to mesothelioma,  “Increasing social connectedness can lead to increased feelings of personal empowerment and may inhibit chronic stress responses,” she explained.  “Initial indications are that individuals with an asbestos-related diagnosis and their carers can benefit, in psychosocial terms, from membership in an on-line support group comprised of similar others.”

Mesothelioma typically affects the lungs and stomach but in rare cases, has also attacked the heart (pericardial mesothelioma), and testicles (tunica vaginalis). Because malignant mesothelioma is so rare, it often mimics other disorders. For a complete and accurate diagnosis, a doctor will review the patient’s personal history, do a physical exam to check for lumps, and if warranted, will order imaging scans (CT, MRI, X-ray) to look for definitive signs of cancer.

If the doctor suspects cancer, a biopsy will be conducted to test the tissue sample.

There are treatment options for mesothelioma patients but often, the diagnosis comes in the latter stage of the disease. Finding an online community through Facebook or other social media site can give patients and their families a virtual hand to hold, a way to share information, and help them to feel empowered while living with a disease that often leaves people feeling very isolated and powerless.