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If you have been diagnosed with mesothelioma, you need information and to learn as much as you can as quickly as you can about this rare and challenging condition. Though medical science is still working to find a cure, there are a number of important things that are known and understood about mesothelioma. Here are a few facts to get you started:
- Mesothelioma is caused by exposure to asbestos. Asbestos is a mineral that was used in a number of industrial and occupational settings in the United States. It was used especially heavily in the United States military and in particular in the U.S. Navy and on ships.
- There are four types of mesothelioma: pleural (which impacts the cavity in which the lungs are found), peritoneal (which impacts the abdominal cavity), pericardial (which impacts the cavity that holds the heart), and testicular (which impacts the testes). Pleural and peritoneal are the most common types, while the other two are extremely rare.
- Mesothelioma is diagnosed in approximately 2,500 Americans each year. Life expectancy has expanded as a result of research, but is still rarely more than five years from time of diagnosis, and is most frequently between twelve months and eighteen months.
Mesothelioma is a Worldwide Disease
Mesothelioma is considered an extremely rare condition. Its incidence is falling in the United States as a result of the ban on the use of asbestos that was instituted in the mid-1980s. It is extremely common in Australia and Europe, and its incidence is on the rise in many places in the world where asbestos continues to be used. Globally over 14,000 people are diagnosed with mesothelioma each year.
If you have a history of exposure to asbestos it is important that you make your physician aware of this so that they can be on the lookout for symptoms. This will improve your chances of effective treatment if you are diagnosed.
Here are some of the important statistics about incidence and who gets diagnosed with this cancer:
- Pleural mesothelioma represents between 70 and 90% of all diagnosed cases, with peritoneal mesothelioma accounting for between 19 and 30%.
- Only a small percentage (between 2 and 10%) of those exposed to asbestos over a prolonged period of time will be diagnosed with mesothelioma.
- Women are far less likely to be diagnosed with mesothelioma but have longer survival rates. Men are diagnosed 4.6 times more frequently than women.
- Multimodality treatment approaches have proven to be most effective in fighting mesothelioma, and have provided those patients who have received it with a median survival of 29 months.
Latency Period and Symptoms
Asbestos exposure is known to be a major risk factor for mesothelioma, but it can actually take decades for symptoms of the illness to appear. This is called the latency period. Many people who have worked around asbestos seemed fine until they received a diagnosis between two and five decades after first being exposed. This is why most people diagnosed with mesothelioma are older. It is important if you believe there is any chance you could have been exposed, that you are aware of the signs and symptoms of mesothelioma:
- Pleural mesothelioma, the most common form, causes symptoms that are frustratingly similar to those of more common illnesses: a persistent cough, chest pains, and shortness of breath. These symptoms are not often taken seriously or cause misdiagnoses because they are similar to the flu or pneumonia.
- Peritoneal mesothelioma, which affects the abdominal cavity, causes symptoms that may include pain and swelling in the abdomen, diarrhea, constipation, or bowel obstruction. Pericardial mesothelioma is very rare, and it causes chest pains, irregular heartbeat, palpitations, difficulty breathing, fatigue, night sweats, and a fever.
- Pericardial mesothelioma is a rare type of this kind of cancer that affects the tissue lining the heart, known as the pericardium. Only a couple hundred cases of this type have ever been diagnosed. Because it is so rare, pericardial mesothelioma is difficult to diagnose. Symptoms it may cause include heart palpitations and an irregular heartbeat, shortness of breath, chest pains, coughing, fatigue, heart failure, and swelling in the lower limbs.
Diagnosing mesothelioma is tricky because it is so rare and because its symptoms mimic those of more common illnesses. Even when it is clearly cancer, it is easy to misdiagnose pleural mesothelioma as lung cancer. The important steps that lead to a firm diagnosis are:
- A physical exam and blood tests that often rule out more common conditions.
- X-rays that can eliminate some diseases, like pneumonia as a cause of symptoms.
- More detailed scans, including MRI or CT imaging to investigate soft tissues and look for abnormal areas that may be tumors.
- A biopsy to remove and examine fluid or tissue from the abnormal region seen in a scan. This helps pathologists determine if cells are malignant, what type they are, and where the cancer originated.
Treatment for mesothelioma depends on several factors: the type of mesothelioma, the stage of the cancer, and the health of the individual. Most patients are treated with a multimodal approach and a combination of:
- Surgery, which is used to remove as much cancerous tissue as possible,
- Radiation therapy, to shrink tumors or destroy any remaining cancer cells after surgery, and
- Chemotherapy, which involves giving intravenous drugs to kill fast-growing cancer cells and can be used before, after, or separately from surgery.
Peritoneal mesothelioma is often treated with surgery followed by heated chemotherapy drugs that are administered directly into the abdominal cavity. Some developing treatments are just beginning to be used and tested, including gene therapy, immunotherapy, and targeted therapy.
Staging and Prognosis
If you have been diagnosed with mesothelioma, you also received a stage designation. All cancers are staged from one to four, depending on how advanced it is.
- During stage I, the cancer remains localized, although with mesothelioma the prognosis is still not good.
- By stage II the cancer has spread in the local area.
- Stage III mesothelioma has spread to lymph nodes.
- By stage IV the cancer has metastasized, or spread to more distant parts of the body. Managing the disease becomes more limited as the stages advance.
Financial Assistance and Compensation
Many people end up with a mesothelioma diagnosis because of being victims of asbestos exposure. Some turn to asbestos lawsuits against manufacturers of asbestos products or former employers to get compensation. Others are able to make claims with asbestos trust funds, which are specifically set up by companies to compensate victims. Veterans may turn to the Veterans Administration to get financial assistance, especially for medical care.
Page Edited by Patient Advocate Dave Foster
Dave has been a mesothelioma Patient Advocate for over 10 years. He consistently attends all major national and international mesothelioma meetings. In doing so, he is able to stay on top of the latest treatments, clinical trials, and research results. He also personally meets with mesothelioma patients and their families and connects them with the best medical specialists and legal representatives available.