Clapper, Patti, Schweizer and Mason

This is the third of our four part series describing what its like to have mesothelioma from the mesothelioma patient’s perspective. The first and second parts discussed first being diagnosed and coping with the symptoms of mesothelioma. The next burden for many patients then becomes deciding which treatment is best and figuring out how to cover medical costs. 

 

Patients diagnosed with mesothelioma have varying experiences of their medical treatments, depending on individual differences as well as what type of mesothelioma they have and to what degree the disease has progressed. 

 

Patients who have malignant pleural mesothelioma often require pleural aspirations to relieve fluid build up in the lungs. Pleural effusions, when there is abnormal build up of fluid in the pleural space surrounding the lungs, can happen more quickly than patients expect and the need to address them can take treatment plans off track. The most common symptoms associated with pleural effusions are dypsnea, cough and chest pain.  (See our recent article on Dypsnea.) Fluid build up, and its accompanying symptoms, caused much concern and distress for many patients and their caregivers.

 

Another cause of distress was the confusion created by having to see so many doctors, especially when it required having to travel and go to multiple locations.   Patients can be overwhelmed by seeing different mesothelioma specialists, such as oncologists, thoracic surgeons, palliative nurses, etc. in addition to their regular family doctor. Just the terminology alone that is associated with the disease and different doctors is confusing.

 

Most patients and loved ones also struggled with deciding which type of treatment to undergo, and whether they should seek second opinions or participate in a clinical trial. When patients did make a choice, they were often discouraged with the results. Despite knowing that mesothelioma has no known cure, some patients were extremely disappointed after having major surgery or chemotherapy treatments only to discover that it may have had little or no effect on extending survival times or quality of life. Many still held onto hope that, in their case, it would be different. 

 

Lastly, concern over how to cover the costs of medical treatment was common to all patients. Many worried how the costs would affect their loved ones financial stability. Although it is clear that asbestos is the cause of mesothelioma, and the patients were aware of this, some felt conflicted over blaming their employers due to a deep sense of loyalty. Patients knew they were legally entitled to compensation, and some immediately sought the help of mesothelioma lawyers to help offset costs. 

 

If you have been diagnosed with mesothelioma, seek out advice from those that have experience with this disease. Having support from others who know exactly what you’re going through can be extremely helpful in easing worry and the feeling of being overwhelmed.