Clapper, Patti, Schweizer and Mason

This is the first of a four part series that describes the mesothelioma patient’s perspective based upon interviews with those who have been diagnosed. The first part of the series begins with what it is like when first being diagnosed with mesothelioma.

 

Finding out that you or your loved one has been diagnosed with mesothelioma is often shocking and devastating. Mesothelioma is an incurable form of lung cancer that is primarily associated with exposure to asbestos. Asbestos is considered a severe occupational toxic hazard and the only real true protection is to avoid all contact. Federal and state environmental and health agencies now regulate the use and handling of asbestos and asbestos containing materials (ACMs).    Before the 1980’s, however, the use of asbestos in construction and other trades was standard practice and widespread.

 

Once exposed to asbestos, a person is at risk of developing mesothelioma. Malignant mesothelioma is a cancer that is found in the mesothelium, or protective sac, that covers most of the body’s internal organs. The most common form of mesothelioma begins in the pleura (lining of the lung.) There is a long delay of 20 – 40 years between the time of exposure and when symptoms of mesothelioma begin to appear. A history of occupational exposure to asbestos is most common, although mesothelioma can develop from second hand or environmental exposure as well.

 

Most patients first learn that they have mesothelioma after visits with their general practitioner indicate something is wrong and after having given a detailed occupational history. The doctor will generally refer the patient for some form of diagnostic test, such as a chest radiograph. If the x-ray indicates abnormalities, spots or fluid retention, the patient may be referred for a computed tomography (CT) scan or magnetic resonance imaging (MRI). 

 

It can take several days or even a week to get the results from any of the diagnostic tests performed. During such time, it is common for patients to feel quite anxious. Some may have suspicions that they have mesothelioma, either because co-workers or other family members have had it before them, or because they knew they were at risk because of known exposure to asbestos and the risks involved. Despite the suspicions, the waiting period is often a time of anxiety.

 

After the results come back, most patients are told by a doctor who specializes in lung diseases that they have mesothelioma and that it is an incurable form of cancer with little treatment success. Although the diagnosis is just being told, the doctor may also inform the patient of the process for legal compensation because mesothelioma has such a poor prognosis and time can be of the essence. 

 

The most common reactions to finding out about a diagnosis of mesothelioma are shock, feeling numb, overwhelm, and/or stoic acceptance. Many patients do not recall many details of the consultation in which they are told. Family members and loved ones remember more. Most feel a sense of hopelessness at the beginning, as they are told the disease is incurable.

 

After the initial news, many patients report that having a good relationship with their doctor and good communication eases some of the distress and makes it a little easier. Being able to ask questions and learning as much as possible helped ease feelings of powerlessness. Having the support of loved ones was the most appreciated. 

 

So if you suspect you have been exposed to asbestos and are at risk of mesothelioma, the strongest suggestion is to take someone with you to your medical appointments. If you are diagnosed with mesothelioma, learn as much as you can about your type and stage of disease. Seek out mesothelioma lawyers and doctors who specialize in asbestos related cases. Most of all, realize you don’t have to go through it alone and reach out for support.