Living with Mesothelioma

Mesothelioma survivors, their families and their medical teams know that living with mesothelioma is not easy; in fact, they know it can be difficult and can disrupt your life. But they are here to share their personal stories and to offer key information about the impact this cancer can have on your life, and your family’s lives. They are also here to offer hope to all mesothelioma patients.

Thoracic nurse Lisa Hrett has been caring for mesothelioma patients for nearly 25 years. Working alongside some of the leading mesothelioma authorities at Brigham and Women’s Hospital, Lisa knows the challenges and obstacles patients and their families face; and Luaisa knows what it takes to overcome those obstacles. Through our “Nurse’s Corner” Lisa will provide articles of crucial mesothelioma medical information as well as addressing patient’s questions and concerns.

Living with Mesothelioma

At first, you are likely to experience a whirl of powerful emotions. Anger, fear, and sadness may come one on top of the other, leaving you exhausted. You may think you should be talking all this through with your partner, other family members or close friends. But you may find this impossible to do.

Mesothelioma Resources

A mesothelioma diagnosis can be overwhelming, and we are here to answer any questions you might have, and to help you take the steps necessary to find the options that are best suited to your individual needs.

For those diagnosed with mesothelioma, an asbestos-related cancer of the lining of the lung (pleura) or the lining of the abdominal cavity (peritoneum),

 finding a credible source of information about the disease itself and the medical options available, is of the highest priority. After years of research and synthesis of information, we have assembled a web site and packet for patients and their loved ones. We hope you find this web site helpful.

A diagnosis of mesothelioma cancer can feel overwhelming, but you don’t have to deal with it alone. Mesothelioma is known to be a resilient cancer due to its aggressive nature and its ability to fight off the very drugs meant to halt its progression

Testicular Mesothelioma

Mesothelioma typically presents itself in the chest or abdomen, but in rare circumstances, it can develop in the testicles. Testicular mesothelioma occurs when mutated cells in the lining surrounding the testicle begin replicating uncontrollably.

Common symptoms, such as pain and swelling, are similar to several other illnesses. This is why a tissue biopsy is recommended to get an accurate diagnosis.

Patients with testicular mesothelioma generally live 20 months or longer after their diagnosis. Testicular mesothelioma has a slightly better prognosis than mesothelioma in the chest or abdomen.

Little is known about how this cancer develops. Unlike other forms of mesothelioma, there isn’t any conclusive evidence linking asbestos exposure to testicular mesothelioma.

There is a significant lack of research on testicular mesothelioma at this time. Although, asbestos exposure has been associated with some cases of testicular mesothelioma, there isn’t any concrete evidence to support asbestos exposure as a definitive cause of this disease.

Testicular mesothelioma is usually only properly diagnosed through a biopsy after surgery. Most doctors initially confuse testicular mesothelioma with other cancers or hernias. The most common symptom of testicular mesothelioma is the swelling of the testicles, but this symptom is not unique to this disease.

It is important to understand that testicular cancer is not the same as testicular mesothelioma. Testicular cancer is also rare, with an estimated 8,820 new cases in 2014. However, testicular cancer has a different cellular makeup than testicular mesothelioma. These two cancers also develop differently, forming tumors that are unique to each disease.

Pericardial Mesothelioma

Pericardial mesothelioma is a cancer that affects the pericardium. It is currently unknown how the asbestos fibers get into the pericardium, and this type of mesothelioma is extremely hard to detect. Men are two times more likely to be diagnosed with pericardial mesothelioma than women. There have been cases of pericardial mesothelioma metastasizing to the lung or abdomen.

Patients may experience chest pain or other symptoms of pericardial mesothelioma. One of the most common reasons pericardial mesothelioma goes undetected is because it is highly uncommon for mesothelioma to originate in the pericardium. Patients have also reported symptoms that cause it to be mistaken for other heart ailments.

Pericardial mesothelioma can be diagnosed through fluid and tissue biopsies. Patients with pericardial mesothelioma commonly complain about chest pain. When mesothelioma is suspected, cardiac surgeons extract fluid or tissue and test the sample for mesothelioma.

The echo allows a doctor to hear how a patient’s heart is beating and pumping blood. Many patients with pericardial mesothelioma experience chest pain because their heart is unable to pump blood at maximum capacity. Echocardiograms are also essential to determine the extent to which the heart has been affected by the mesothelioma.

Peritoneal Mesothelioma

The peritoneum is a protective membrane that surrounds the abdomen, or belly. It has two layers, and mesothelioma can develop on both. The parietal layer covers the abdominal cavity, while the visceral layer surrounds the stomach, liver and other organs of the abdomen. Together, the layers support the abdominal cavity as a whole and the organs within it.

Early symptoms of peritoneal mesothelioma can include abdominal pain or swelling, and diarrhea or constipation. Unfortunately, some patients don't experience any symptoms until tumors have spread. This scenario makes treating the disease hard and surviving it even harder.

You may not experience cancer symptoms for 20 to 50 years after your first exposure to asbestos. Once asbestos fibers reach the peritoneum and irritate the cells, the peritoneal lining starts to thicken. As the cancer develops, the buildup of excess fluid in the abdomen, known as ascites, may occur next. Over time, tumors form and place pressure on the organs.

Although no definitive answer is available, cancer experts most commonly associate the cause of peritoneal mesothelioma with the following theories:

Swallowed asbestos fibers travel from the digestive system to the peritoneum.

Inhaled asbestos fibers reach the peritoneum through the lymphatic system, which produces and stores cells that fight disease.

Pleural Mesothelioma

Pleural mesothelioma accounts for about 75 percent of all mesothelioma cases. Like other types of mesothelioma, this particular form of the disease gets its name because of where it is formed — in the pleura, a soft tissue that surrounds the lungs. In almost all cases, pleural mesothelioma is caused by asbestos exposure.

The first symptoms of pleural mesothelioma typically include chest pain and shortness of breath. You may experience no symptoms at all in the first few stages of the cancer’s progression.

Symptoms of pleural mesothelioma include persistent dry or raspy cough, coughing up blood (hemoptysis), shortness of breath (dyspnea), and difficulty swallowing (dysphagia). There are four stages of mesothelioma that doctors use to describe how far the cancer has progressed. For many people, unfortunately, symptoms are not noticeable until the cancer is in a later stage — stage III or IV.

Asbestos fibers can cause excess fluid to build up between the two layers of the pleura, a condition called pleural effusion. While a little fluid in your pleural space is important, too much can make breathing difficult. The extra fluid puts pressure on the lungs, causing chest pain that gets worse when you cough or take deep breaths.

Types of Mesothelioma

Mesothelioma is mainly divided into 4 types bases their affecting area.

1. Pleural (lungs)
2. Peritoneal (abdomen)
3. Pericardial (heart)
4. Testicular.

Medical experts acknowledge four main types of mesothelioma — each named for the area of the body where the cancer forms. The most common type, pleural mesothelioma, develops in the lining of the lungs.



Peritoneal mesothelioma forms in the peritoneum, the membrane that lines the abdominal cavity. This is the second-most prevalent type. The overwhelming majority of mesothelioma specialists treat patients with one of these two types.

The rarest forms of the disease are pericardial and testicular mesothelioma. Pericardial mesothelioma starts in the lining of the heart, while testicular mesothelioma develops in the lining of the testicles. Together, these types account for less than 2 percent of all mesothelioma diagnoses.

All the different types and subtypes of this disease share one common thread. They are caused primarily by a prolonged exposure to asbestos, usually in the workplace. If a doctor suspects that you have any form of mesothelioma, you should think back through your work background to find a connection to when you worked with or around asbestos materials and products.

Most pleural mesothelioma patients can remember a time when they breathed in asbestos fibers. In cases of peritoneal mesothelioma, patients often swallowed the fibers. Researchers are less certain about how asbestos triggers the pericardial and testicular forms of the disease.