If you or someone you know has just been diagnosed with mesothelioma, you are probably looking for more information about this frightening disease.
There are answers to frequently asked questions (FAQ) about mesothelioma in this post. There is a lot of helpful information in these pages. There are also suggestions for other places to get support, suggestions, and even more information.
As you read this informationt and as you go through the diagnostic and treatment process yourself or with your loved one, please remember that the treatment of mesothelioma is getting better all the time. There are advances happening right now that may make your treatment, or your loved one’s treatment, more successful.
Lets get to the facts right now:
1. Exactly what is meant by the term mesothelioma?
Mesothelioma is the name of a cancerous tumor that comes from the cells of the
mesothelium. The mesothelium is a thin protective lining that covers most of the
body’s internal organs. Mesothelium has two layers, inner and outer. Mesothelial
cells produce a lubricating fluid that is released into the space between these two
layers, allowing moving organs (such as the beating heart and the expanding and
contracting lungs) to glide easily against adjacent structures without friction.
With mesothelioma, the mesothelial cells begin to divide abnormally without
control. Since mesothelium covers most the internal organs, the cancer rapidly
spreads to cover these organs. Cancer cells also spread away from the area of
origin to other parts of the body via blood stream. Most cases of mesothelioma
begin in the pleura (chest) or peritoneum (abdomen).
Mesothelioma is highly aggressive cancer that rapidly spreads and is fatal soon
after it is diagnosed. Fortunately, it is relatively rare as compared to many other
cancers such as cancer of the colon, breast or prostate. Mounting attention is
being paid to this tumor because of its increased risk among people with heavy
exposure to asbestos.
2. Are their different types of mesothelioma? What are the differences?
There are four types of mesothelioma according to location, but two of these are rare. They are named after the type of mesothelium involved. Most mesotheliomas are in the chest, and the second most common place is in the abdomen. After that, there are some around the heart, and a rare few in the genital area.
Pleural mesothelioma (cancer of the lung lining) is by far the most common type, making up about 75% to 90% of all cases. The peritoneum is the second most frequent site of origin of mesothelioma, after the pleura. Pericardial mesotheliomas are relatively rare.
All of these types of mesotheliomas (pleural, peritoneal and pericardial) are very similar in behavior.
Another fourth type is mesothelioma of the tunica vaginalis testis which is very rare. Only about 100 cases of this type have been documented to date. The tumors arising in the genital tract are far less aggressive.
Mesotheliomas can also be distinguished by cell types, as seen under a microscope. Most, around 60%, are epithelioid, and have the better chance at treatment. Around 20% are sarcomatoid, and the others are mixed combinations of these.
3. What does the word pleura mean?
The pleura is the mesothelium lining the chest cavity and surrounding the lungs and other organs. The layer around the lungs is called the visceral pleura. The layer inside the chest wall is called the parietal pleura. The space between the layers is called the pleural space.
4. Who is at risk for developing mesothelioma?
Anyone who has been exposed to asbestos is at risk for mesothelioma. In general, the more exposure to asbestos, the higher the risk is of developing mesothelioma. Most people who develop mesothelioma are exposed to asbestos at work. Some people have close relatives who worked with asbestos and brought it home on their clothes. Others lived in areas where asbestos is mined or processed. There are some people who have no known asbestos exposure who develop mesothelioma. Asbestos is used in a wide variety of ways, in insulation, cement, brakes, shingles, flooring and many other products. The occupations with the highest risk are miners, factory workers, railroad workers, ship builders and construction workers - especially those who install asbestos-containing insulation.
Mesothelioma risk is believed to be increased in people who are exposed to high levels of asbestos, in people who are exposed to asbestos over a long period of time and in people exposed to asbestos at a young age. It can take 30 to 40 years or more for mesothelioma to develop as a result of asbestos exposure. It is interesting to note that some people with years of asbestos exposure never develop mesothelioma. And yet, others with very brief exposure develop the
disease. This indicates that there may be other factors involved in determining the risk for mesothelioma. For example, inherited predisposition to cancer and impaired immune status can increases the risk.
5. Is there a specific cause for mesothelioma? If so, what is it?
Mesothelioma is almost always caused by asbestos exposure. There are a few other agents that may cause mesothelioma. This is an area of ongoing research. Asbestos- Occupational exposure to asbestos is the major causative factor for mesothelioma. Asbestos is the commercial name for a group of magnesium silicate fibrous minerals. It has been widely used in the building, shipping, and sound-proofing industries. Asbestos is made up of tiny bundles of fibers that may become airborne when asbestos-containing materials are damaged or disturbed. Mesothelioma occurs due to continued and prolonged inhalation of these fibers. Most people who develop mesothelioma have a history of direct exposure to asbestos at the job. Some patients have been indirectly exposed, such as by washing the clothes of a family member who worked with asbestos or by home
renovation using asbestos cement products. The lifetime risk of developing mesothelioma in heavily exposed individuals is as high as 7 to 10%.
Symptoms of mesothelioma may not appear until 20 to 50 years after exposure to asbestos. The risk of developing mesothelioma increases over time, even after exposure to asbestos has been stopped. As stated previously, some cases of mesothelioma have been reported in individuals without any known exposure to asbestos. Whilst up to 90% of reported mesotheliomas are asbestos-related, other possible causative agents have been identified. Radiation therapy- Radiation to chest or abdomen (used for treatment of other cancers) may be a risk factor for the subsequent development of mesothelioma. Usually, there is a long latent period between the initial treatment and the diagnosis of the mesothelioma. Virus- Simian virus-40 (SV-40) is a virus with potential to cause cancers in humans. Some studies have shown the presence of this virus in a proportion of mesothelioma cases (some of which did not have obvious asbestos exposure). However, the causal nature of this association has been questioned and the exact role of simian virus-40 infection is unclear at present. An association between the simian virus-40 and mesothelioma could be helpful for early detection of tumors and treatment with potential vaccination in the future, if there is truly a relationship.
Others- The development of malignant mesothelioma has also been associated in rare cases with exposure to Thorotrast, an X-ray contrast medium used in 1930-1950. Due to its side effects, the use of the contrast medium was banned and its production stopped in 1949/50. Inhalation of erionite, a fibrous silicate mineral usually found in volcanic ash, has also been implicated in causation of this cancer. The mineral also has been found in gravel mines in southwestern North Dakota. Erionite is not currently regulated by the U.S. Environmental Protection Agency (EPA).
6. How can mesothelioma be prevented?
Mesothelioma can be prevented by eliminating exposure to asbestos. There have been limitations placed on the use of asbestos, but it is by no means gone from the environment or the workplace. Despite its well-documented dangers, you may be surprised to learn that asbestos has yet to be completely banned in the United States. On July 12, 1989, EPA issued a rule banning most asbestos-containing products.
In 1991, this regulation was overturned by the Fifth Circuit Court of Appeals in New Orleans. As a result of the Court’s decision, the following six specific asbestos-containing product use categories remain banned:
• Corrugated paper
• Rollboard
• Commercial paper
• Specialty paper
• Flooring felt
• New uses of asbestos
Products containing asbestos are still sold and manufactured in the United States today. The use of asbestos-containing material, such as asbestos-cement corrugated sheet, asbestos-cement flat sheet, asbestos clothing, pipeline wrap, and roofing felt, is not banned. Because of the North American Free Trade Act, products that are made for use in Canada and Mexico, neither of which has banned the use of asbestos in products, are available today in the United States.
More than one thousand different products are made using asbestos. In the United States, chrysotile (white asbestos) has been the most commonly used type of asbestos. According to the U.S. EPA Asbestos Building Inspectors Manual, white asbestos accounts for approximately 95% of asbestos found in buildings in
the United States. Amosite or brown asbestos is the second most likely type to be found in buildings.
Products that may contain asbestos include but are not limited to:
• roofing tars, felts, siding, and shingles
• vinyl floor tiles, sheeting, adhesives
• ceiling tiles
• panels, siding, countertops, and pipes
• fireproofing and fire resistant drywall
• interior fire doors
• HVAC systems
• caulk
• gaskets
• brake pads
• clutch plates
• asbestos gloves
• fire blankets
• fire proof clothing
• thermal pipe insulation
You can protect yourself and your family by being aware of the fact that asbestos is the cause of mesothelioma in most cases. Even though many asbestos related products have been banned, there are still some products that are not banned. EPA does not track the manufacture, processing, or distribution of asbestos containing products.
Therefore, while dealing with products from asbestos related industries, it would be prudent to inquire as to the presence of asbestos in particular products. The presence of asbestos in our environment is still widespread, but has decreased as use of this material has been scaled down. Since asbestos is still being used, and can still be found in many locations, you need to know if you could come in contact with it. Your employer should know. OSHA, the Occupational Safety and Health Administration mandates that
employers protect employees, for example, by monitoring for asbestos as well as give employees facemasks to use.
The Occupational Safety and Health Administration (OSHA) is a component of the U.S. Department of Labor (DOL) and is the Federal agency responsible for health and safety regulations in maritime, construction, manufacturing, and service workplaces. OSHA established regulations dealing with asbestos exposure on the job, specifically construction work and shipyards. This standard requires employers to follow various procedures to protect their employees from inhaling asbestos fibers. The standard contains requirements that vary depending on the kind of work being undertaken, the amount of asbestos in the air, and other factors.
Employers are required to monitor the airborne concentration of asbestos in the work place regularly. Employers should comply with all OSHA regulations and take preventive measures for employees, such as
mandatory face masks, to reduce exposure risk.
You and your employer can obtain a copy of this standard and the booklet:. Asbestos Standards for Construction (OSHA 3096) describing how to comply with it from:
OSHA Publications, P.O. Box 37535, Washington, DC 20013-7535
(202) 693-1888(phone), or (202) 693-2498(fax);
Or visit OSHA’s website at: www.osha.gov
You can also get material tested for asbestos. If you are in the building trade or related jobs, you can still be exposed.
7. What actually is asbestos?
Asbestos is the commercial name for a group of naturally-occurring, magnesium silicate fibrous minerals found in certain rock formations, mined from open pit mines. Most of the asbestos used in the United States today comes from Canada.
Asbestos was called the “miracle fiber” because the fibers were durable, strong, flexible, and resistant to wear. The fibers didn’t burn and didn’t conduct heat and electricity. Asbestos was not expensive, easy to work with, and it was abundant. The word “asbestos” described the nature of these fibers and is derived from a Greek word meaning “inextinguishable”. It could be used in many different products.
8. What kinds of symptoms might I experience from mesothelioma?
The latent period, which is the period between actually being in contact with the mineral and the onset of mesothelioma, can be quite long. Usually, there is a latent period of approximately 30-40 years before symptoms appear. It is not uncommon for patients to complain of non-specific symptoms for a number of
months prior to a confirmed diagnosis. The non-specific symptoms seen in patients, regardless of the mesothelioma-type, include fever, malaise, weight loss and tiredness.
Specific symptoms depend upon the type of mesothelioma (site of origin). Interestingly, the cancer cells in mesothelioma have ability to produce fluid that fills up the cavity they line (known as effusion). Many of the symptoms are due to fluid accumulation. Most mesotheliomas are in the chest. If you have a pleural mesothelioma, you will have respiratory symptoms. Pleural mesothelioma begins as small nodules on the lining of lungs. These nodules grow larger and slowly cover the entire pleural lining, eventually completely encasing the lungs.
In earlier stages of tumor growth, symptoms are non-specific such as fever and night sweats. Initially, the disease may be mistaken for pneumonia. Gradually increasing tumor often leads to accumulation of fluid in the pleural cavity (known as pleural effusion). Right-sided chest involvement is slightly more common. The fluid compresses the lungs and leads to progressive shortness of breath and dry cough. Sometimes, large amounts of fluid accumulate rapidly within hours leading to sudden onset of breathlessness. In advanced cases, patients may complain of chest pain due to spread of the cancer to bony chest wall. If you have mesothelioma in the abdomen, a peritoneal mesothelioma, your symptoms will be related to your intestinal tract. The latent period for peritoneal involvement appears to be slightly shorter, 20-30 years, as compared to pleural mesothelioma.
Patients with peritoneal mesothelioma (a cancer of the lining of the abdominal cavity) may experience abdominal pain and fullness in abdomen. They often present with increasing abdominal girth due to filling up of abdominal cavity with fluid (also known as ascites). It is not uncommon to see patients with digestive disturbances when bowel lining is affected by the disease. When the disease is widespread in the abdominal cavity, it may lead to bowel obstruction.
Sometimes the disease is found incidentally when the patient is being investigated for another health problem such as gallbladder or appendix. If you have the rare mesothelioma of the pericardium, your symptoms will come from your heart, and you may feel something like a heart attack or heart failure. These symptoms can include chest pain, difficulty breathing, palpitations, swelling in the lower body.
In the rare case of mesothelioma of the tunica vaginalis testes, you might find a painless lump in the groin, which would probably be diagnosed as a hernia.
9. My doctor suspects mesothelioma. If that’s what I have, how will the doctor diagnose it?
Ultimately, mesothelioma must be diagnosed by biopsy. A biopsy is a sample of the tissue, which is removed and sent to a pathologist for examination. Exactly how your doctor determines you need a biopsy depends on many things. There will be much for your doctor to review before you get to a biopsy.
Mesothelioma is not easy to diagnose. Doctors will need all the information they can get to make the diagnosis. To begin with, the clinical history may be the most important clue. Anyone with asbestos exposure and symptoms of lung disease, including shortness of breath, chest pain or cough should be evaluated for
possible mesothelioma as well as asbestosis. If you have symptoms of trouble in your chest or lungs, that is what your doctor will first look at. Your doctor will examine you carefully, paying special attention to your heart and lungs.
Without knowledge of asbestos exposure, the doctor may find little or nothing on physical examination that would indicate the presence of a mesothelioma. The doctor will listen to your lungs. There may be areas where the doctor cannot hear the breath sounds. This can be because of a pleural effusion, or fluid between
the chest wall and lung on one side or the other. There can be rattling or wheezing depending on whether or not there is mesothelioma in the airways, and also depending on whether or not the person has any other lung disease, like emphysema or asbestosis. There are other physical findings a doctor can pick up by tapping on the chest.
The doctor will also check for any swelling of the lymph glands above the collarbones or in the armpits.
There are other clues to trouble in the lungs, which can include a slightly blue tint if you are not getting enough oxygen, and a deformity of the ends of the fingers called clubbing, which happens to patients with significant and longstanding lung disease.
Taking all these things together in a person with occupational or other exposure to asbestos, the doctor may be suspicious of mesothelioma and go on to order additional tests with that in mind. Otherwise, the doctor may be looking to find some other cause for a problem in the lungs.
If you have abdominal symptoms including nausea, vomiting, pain, bloating and swelling, or blockage but do not know about asbestos exposure, it is very likely the doctor will not even consider mesothelioma at the time of the first examination. You might have a very distended, rounded abdomen. The doctor may be able to
tell by various maneuvers that there is fluid in the abdomen. That is a sign of mesothelioma, but is more often caused by liver diseases like cirrhosis. There may be masses that the doctor can feel. The doctor will also check the lower body for any swelling.
With these findings, the doctor would most likely send you for laboratory tests and an ultrasound, although a CAT scan would be useful, depending on the exact findings. If you have a mesothelioma of the pericardium around the heart, you would appear to have heart failure. Even with a history of asbestos exposure, nothing in
the physical exam would necessarily alert the physician. If it is clear that you have fluid around the heart in association with asbestos exposure, mesothelioma would be suspected. The fluid would be detected most likely by an echocardiogram.
Men with the very rare mesothelioma of a layer of cells near the testicles appear to have a hernia. While the physical examination of every patient is important, in the case of mesothelioma, the diagnosis is unlikely to be made or even seriously considered until X-rays and other tests provide more information. The doctor will order a chest x-ray. The x-ray will be abnormal if you have a pleural mesothelioma. It may show a collection of fluid in the pleural space, between the lungs and chest wall. A one-side pleural effusion, especially in a person with asbestos exposure, will make your doctor think of mesothelioma.
Other tests might be CT scans or MRI scans of the area, which can give a better picture of where the problem is and how best to approach the area. If you have mesothelioma in your abdomen, you will probably also have scans. At some point, your doctor may suspect mesothelioma or some other cancer. In either case, your doctor will work with other doctors to make the diagnosis (see questions below).
In some places, your regular doctor may send you to an oncologist, who is a cancer specialist, to make sure your case is diagnosed properly. Much of the time, your regular doctor will help you through this process.
A biopsy, or sample of tissue, has to be obtained. This will be done in whatever manner is easiest for the patient. The sample will be analyzed, using chemical tests as well as stains to see the cells. Putting all of this together will make the diagnosis of pleural mesothelioma possible. Abdominal mesothelioma is even harder to diagnose. Again, if a patient has known asbestos exposure and symptoms of abdominal pain or intestinal
blockage, a doctor must think about mesothelioma.
A CT scan will probably be needed to make a preliminary diagnosis of abdominal mesothelioma. Biopsy again will be done in whatever manner is easiest for the patient. Mesothelioma is almost always diagnosed because it has already spread and caused symptoms. It is very rarely diagnosed early. If a patient does not know of asbestos exposure, and has a tumor mass, the diagnosis will probably not be suspected until a biopsy is obtained.
10. Are there any blood tests that might indicate that I have mesothelioma?
There are no blood tests that can diagnose mesothelioma at this time. There are a number of tests that can measure compounds in the blood that come from the mesothelioma. These cannot make the diagnosis. They are more often used to follow a patient’s response to treatment later on, when the doctors will look to see
if the blood levels of these substances are going up or down. There is active research trying to find blood tests to help diagnose mesothelioma.
Researchers are looking for chemicals that may come from mesothelioma cells and not normal cells. If a chemical from mesothelioma cells can be measured, it could indicate the presence of mesothelioma. More than one group of these chemicals has been found.
Soluble Mesothelin-Related Peptides, or SMRP, have been studied for some time. Levels of SMRP are high in patients with mesothelioma. There is a blood test available to measure levels of SMRP called a Mesomark Assay. It is an Enzyme-Linked Immunosorbent Assay, or ELISA test. SMRP levels can be high in patients long before they are diagnosed with mesothelioma. It is hoped that this can become a useful screening test for
patients at risk of mesothelioma - anyone with known asbestos exposure but with no symptoms.
At the current time it is not used for screening. It is only available as an FDA humanitarian-use device for the purpose of following patients treated for mesothelioma. Levels should drop after treatment, and can be watched to give an indication of whether or not the tumor is reoccurring or growing. Because mesothelioma is a rare disease, sometimes devices that can only benefit a small group of people with the disease will be allowed in use without the same lengthy testing period normally required. When there are only a small number of affected patients, there will not be enough numbers to do the statistical analysis recommended. There may also not be the research money that would be provided for devices expected to help a lot of people.
The FDA says: “A Humanitarian Use Device (HUD) is a device that is intended to benefit patients by treating or diagnosing a disease or condition that affects or is manifested in fewer than 4,000 individuals in the United States per year. A device manufacturer`s research and development costs could exceed its market returns for diseases or conditions affecting small patient populations. The HUD provision of the regulation provides an incentive for the development of devices for use in the treatment or diagnosis of diseases affecting these populations.
To obtain approval for an HUD, a humanitarian device exemption (HDE) application is submitted to FDA. An HDE is similar in both form and content to a premarket approval (PMA) application, but is exempt from the effectiveness requirements of a PMA. An HDE application is not required to contain the results of scientifically valid clinical investigations demonstrating that the device is effective for its intended purpose. The application, however, must contain sufficient information for FDA to determine that the device does not pose an unreasonable or significant risk of illness or injury, and that the probable benefit to health outweighs the risk of injury or illness from its use, taking into account the probable risks and benefits of currently available devices or alternative forms of treatment.
Additionally, the applicant must demonstrate that no comparable devices are available to treat or diagnose the disease or condition, and that they could not otherwise bring the device to market. An approved HDE authorizes marketing of the HUD. However, an HUD may only be used in facilities that have established a local institutional review board (IRB) to supervise clinical testing of devices and after an IRB has approved the use of the device to treat or diagnose the specific disease. The labeling for an HUD must state that the device is a humanitarian use device and that, although the device is authorized by Federal Law, the effectiveness of the device for the specific indication has not been demonstrated.” The FDA has only approved the Mesomark Assay to follow patients with known mesothelioma.
Osteopontin is also elevated in the blood of patients with mesothelioma. It is both a tumor marker and a potential way to diagnose the cancer. Research continues on both osteopontin and SMRPs. The term “tumor markers” refers to chemicals and substances made by tumor cells that can be measured. Often these chemicals will also be made by normal cells, but not in as much quantity.
While this often makes them unsuitable for diagnosis, the amount of these substances can be monitored to get an idea about the tumor, as to whether or not it is growing or responding to treatment. Soluble Mesothelin-Related Peptides and osteopontin are tumor markers for mesothelioma. Tumor markers for other cancers are probably more recognized by most people, such as PSA (prostate specific antigen) which has been used to follow prostate cancer, or CA 125 which is elevated in patients with ovarian cancer.
2. Are their different types of mesothelioma? What are the differences?
There are four types of mesothelioma according to location, but two of these are rare. They are named after the type of mesothelium involved. Most mesotheliomas are in the chest, and the second most common place is in the abdomen. After that, there are some around the heart, and a rare few in the genital area.
Pleural mesothelioma (cancer of the lung lining) is by far the most common type, making up about 75% to 90% of all cases. The peritoneum is the second most frequent site of origin of mesothelioma, after the pleura. Pericardial mesotheliomas are relatively rare.
All of these types of mesotheliomas (pleural, peritoneal and pericardial) are very similar in behavior.
Another fourth type is mesothelioma of the tunica vaginalis testis which is very rare. Only about 100 cases of this type have been documented to date. The tumors arising in the genital tract are far less aggressive.
Mesotheliomas can also be distinguished by cell types, as seen under a microscope. Most, around 60%, are epithelioid, and have the better chance at treatment. Around 20% are sarcomatoid, and the others are mixed combinations of these.
3. What does the word pleura mean?
The pleura is the mesothelium lining the chest cavity and surrounding the lungs and other organs. The layer around the lungs is called the visceral pleura. The layer inside the chest wall is called the parietal pleura. The space between the layers is called the pleural space.
4. Who is at risk for developing mesothelioma?
Anyone who has been exposed to asbestos is at risk for mesothelioma. In general, the more exposure to asbestos, the higher the risk is of developing mesothelioma. Most people who develop mesothelioma are exposed to asbestos at work. Some people have close relatives who worked with asbestos and brought it home on their clothes. Others lived in areas where asbestos is mined or processed. There are some people who have no known asbestos exposure who develop mesothelioma. Asbestos is used in a wide variety of ways, in insulation, cement, brakes, shingles, flooring and many other products. The occupations with the highest risk are miners, factory workers, railroad workers, ship builders and construction workers - especially those who install asbestos-containing insulation.
Mesothelioma risk is believed to be increased in people who are exposed to high levels of asbestos, in people who are exposed to asbestos over a long period of time and in people exposed to asbestos at a young age. It can take 30 to 40 years or more for mesothelioma to develop as a result of asbestos exposure. It is interesting to note that some people with years of asbestos exposure never develop mesothelioma. And yet, others with very brief exposure develop the
disease. This indicates that there may be other factors involved in determining the risk for mesothelioma. For example, inherited predisposition to cancer and impaired immune status can increases the risk.
5. Is there a specific cause for mesothelioma? If so, what is it?
Mesothelioma is almost always caused by asbestos exposure. There are a few other agents that may cause mesothelioma. This is an area of ongoing research. Asbestos- Occupational exposure to asbestos is the major causative factor for mesothelioma. Asbestos is the commercial name for a group of magnesium silicate fibrous minerals. It has been widely used in the building, shipping, and sound-proofing industries. Asbestos is made up of tiny bundles of fibers that may become airborne when asbestos-containing materials are damaged or disturbed. Mesothelioma occurs due to continued and prolonged inhalation of these fibers. Most people who develop mesothelioma have a history of direct exposure to asbestos at the job. Some patients have been indirectly exposed, such as by washing the clothes of a family member who worked with asbestos or by home
renovation using asbestos cement products. The lifetime risk of developing mesothelioma in heavily exposed individuals is as high as 7 to 10%.
Symptoms of mesothelioma may not appear until 20 to 50 years after exposure to asbestos. The risk of developing mesothelioma increases over time, even after exposure to asbestos has been stopped. As stated previously, some cases of mesothelioma have been reported in individuals without any known exposure to asbestos. Whilst up to 90% of reported mesotheliomas are asbestos-related, other possible causative agents have been identified. Radiation therapy- Radiation to chest or abdomen (used for treatment of other cancers) may be a risk factor for the subsequent development of mesothelioma. Usually, there is a long latent period between the initial treatment and the diagnosis of the mesothelioma. Virus- Simian virus-40 (SV-40) is a virus with potential to cause cancers in humans. Some studies have shown the presence of this virus in a proportion of mesothelioma cases (some of which did not have obvious asbestos exposure). However, the causal nature of this association has been questioned and the exact role of simian virus-40 infection is unclear at present. An association between the simian virus-40 and mesothelioma could be helpful for early detection of tumors and treatment with potential vaccination in the future, if there is truly a relationship.
Others- The development of malignant mesothelioma has also been associated in rare cases with exposure to Thorotrast, an X-ray contrast medium used in 1930-1950. Due to its side effects, the use of the contrast medium was banned and its production stopped in 1949/50. Inhalation of erionite, a fibrous silicate mineral usually found in volcanic ash, has also been implicated in causation of this cancer. The mineral also has been found in gravel mines in southwestern North Dakota. Erionite is not currently regulated by the U.S. Environmental Protection Agency (EPA).
6. How can mesothelioma be prevented?
Mesothelioma can be prevented by eliminating exposure to asbestos. There have been limitations placed on the use of asbestos, but it is by no means gone from the environment or the workplace. Despite its well-documented dangers, you may be surprised to learn that asbestos has yet to be completely banned in the United States. On July 12, 1989, EPA issued a rule banning most asbestos-containing products.
In 1991, this regulation was overturned by the Fifth Circuit Court of Appeals in New Orleans. As a result of the Court’s decision, the following six specific asbestos-containing product use categories remain banned:
• Corrugated paper
• Rollboard
• Commercial paper
• Specialty paper
• Flooring felt
• New uses of asbestos
Products containing asbestos are still sold and manufactured in the United States today. The use of asbestos-containing material, such as asbestos-cement corrugated sheet, asbestos-cement flat sheet, asbestos clothing, pipeline wrap, and roofing felt, is not banned. Because of the North American Free Trade Act, products that are made for use in Canada and Mexico, neither of which has banned the use of asbestos in products, are available today in the United States.
More than one thousand different products are made using asbestos. In the United States, chrysotile (white asbestos) has been the most commonly used type of asbestos. According to the U.S. EPA Asbestos Building Inspectors Manual, white asbestos accounts for approximately 95% of asbestos found in buildings in
the United States. Amosite or brown asbestos is the second most likely type to be found in buildings.
Products that may contain asbestos include but are not limited to:
• roofing tars, felts, siding, and shingles
• vinyl floor tiles, sheeting, adhesives
• ceiling tiles
• panels, siding, countertops, and pipes
• fireproofing and fire resistant drywall
• interior fire doors
• HVAC systems
• caulk
• gaskets
• brake pads
• clutch plates
• asbestos gloves
• fire blankets
• fire proof clothing
• thermal pipe insulation
You can protect yourself and your family by being aware of the fact that asbestos is the cause of mesothelioma in most cases. Even though many asbestos related products have been banned, there are still some products that are not banned. EPA does not track the manufacture, processing, or distribution of asbestos containing products.
Therefore, while dealing with products from asbestos related industries, it would be prudent to inquire as to the presence of asbestos in particular products. The presence of asbestos in our environment is still widespread, but has decreased as use of this material has been scaled down. Since asbestos is still being used, and can still be found in many locations, you need to know if you could come in contact with it. Your employer should know. OSHA, the Occupational Safety and Health Administration mandates that
employers protect employees, for example, by monitoring for asbestos as well as give employees facemasks to use.
The Occupational Safety and Health Administration (OSHA) is a component of the U.S. Department of Labor (DOL) and is the Federal agency responsible for health and safety regulations in maritime, construction, manufacturing, and service workplaces. OSHA established regulations dealing with asbestos exposure on the job, specifically construction work and shipyards. This standard requires employers to follow various procedures to protect their employees from inhaling asbestos fibers. The standard contains requirements that vary depending on the kind of work being undertaken, the amount of asbestos in the air, and other factors.
Employers are required to monitor the airborne concentration of asbestos in the work place regularly. Employers should comply with all OSHA regulations and take preventive measures for employees, such as
mandatory face masks, to reduce exposure risk.
You and your employer can obtain a copy of this standard and the booklet:. Asbestos Standards for Construction (OSHA 3096) describing how to comply with it from:
OSHA Publications, P.O. Box 37535, Washington, DC 20013-7535
(202) 693-1888(phone), or (202) 693-2498(fax);
Or visit OSHA’s website at: www.osha.gov
You can also get material tested for asbestos. If you are in the building trade or related jobs, you can still be exposed.
7. What actually is asbestos?
Asbestos is the commercial name for a group of naturally-occurring, magnesium silicate fibrous minerals found in certain rock formations, mined from open pit mines. Most of the asbestos used in the United States today comes from Canada.
Asbestos was called the “miracle fiber” because the fibers were durable, strong, flexible, and resistant to wear. The fibers didn’t burn and didn’t conduct heat and electricity. Asbestos was not expensive, easy to work with, and it was abundant. The word “asbestos” described the nature of these fibers and is derived from a Greek word meaning “inextinguishable”. It could be used in many different products.
8. What kinds of symptoms might I experience from mesothelioma?
The latent period, which is the period between actually being in contact with the mineral and the onset of mesothelioma, can be quite long. Usually, there is a latent period of approximately 30-40 years before symptoms appear. It is not uncommon for patients to complain of non-specific symptoms for a number of
months prior to a confirmed diagnosis. The non-specific symptoms seen in patients, regardless of the mesothelioma-type, include fever, malaise, weight loss and tiredness.
Specific symptoms depend upon the type of mesothelioma (site of origin). Interestingly, the cancer cells in mesothelioma have ability to produce fluid that fills up the cavity they line (known as effusion). Many of the symptoms are due to fluid accumulation. Most mesotheliomas are in the chest. If you have a pleural mesothelioma, you will have respiratory symptoms. Pleural mesothelioma begins as small nodules on the lining of lungs. These nodules grow larger and slowly cover the entire pleural lining, eventually completely encasing the lungs.
In earlier stages of tumor growth, symptoms are non-specific such as fever and night sweats. Initially, the disease may be mistaken for pneumonia. Gradually increasing tumor often leads to accumulation of fluid in the pleural cavity (known as pleural effusion). Right-sided chest involvement is slightly more common. The fluid compresses the lungs and leads to progressive shortness of breath and dry cough. Sometimes, large amounts of fluid accumulate rapidly within hours leading to sudden onset of breathlessness. In advanced cases, patients may complain of chest pain due to spread of the cancer to bony chest wall. If you have mesothelioma in the abdomen, a peritoneal mesothelioma, your symptoms will be related to your intestinal tract. The latent period for peritoneal involvement appears to be slightly shorter, 20-30 years, as compared to pleural mesothelioma.
Patients with peritoneal mesothelioma (a cancer of the lining of the abdominal cavity) may experience abdominal pain and fullness in abdomen. They often present with increasing abdominal girth due to filling up of abdominal cavity with fluid (also known as ascites). It is not uncommon to see patients with digestive disturbances when bowel lining is affected by the disease. When the disease is widespread in the abdominal cavity, it may lead to bowel obstruction.
Sometimes the disease is found incidentally when the patient is being investigated for another health problem such as gallbladder or appendix. If you have the rare mesothelioma of the pericardium, your symptoms will come from your heart, and you may feel something like a heart attack or heart failure. These symptoms can include chest pain, difficulty breathing, palpitations, swelling in the lower body.
In the rare case of mesothelioma of the tunica vaginalis testes, you might find a painless lump in the groin, which would probably be diagnosed as a hernia.
9. My doctor suspects mesothelioma. If that’s what I have, how will the doctor diagnose it?
Ultimately, mesothelioma must be diagnosed by biopsy. A biopsy is a sample of the tissue, which is removed and sent to a pathologist for examination. Exactly how your doctor determines you need a biopsy depends on many things. There will be much for your doctor to review before you get to a biopsy.
Mesothelioma is not easy to diagnose. Doctors will need all the information they can get to make the diagnosis. To begin with, the clinical history may be the most important clue. Anyone with asbestos exposure and symptoms of lung disease, including shortness of breath, chest pain or cough should be evaluated for
possible mesothelioma as well as asbestosis. If you have symptoms of trouble in your chest or lungs, that is what your doctor will first look at. Your doctor will examine you carefully, paying special attention to your heart and lungs.
Without knowledge of asbestos exposure, the doctor may find little or nothing on physical examination that would indicate the presence of a mesothelioma. The doctor will listen to your lungs. There may be areas where the doctor cannot hear the breath sounds. This can be because of a pleural effusion, or fluid between
the chest wall and lung on one side or the other. There can be rattling or wheezing depending on whether or not there is mesothelioma in the airways, and also depending on whether or not the person has any other lung disease, like emphysema or asbestosis. There are other physical findings a doctor can pick up by tapping on the chest.
The doctor will also check for any swelling of the lymph glands above the collarbones or in the armpits.
There are other clues to trouble in the lungs, which can include a slightly blue tint if you are not getting enough oxygen, and a deformity of the ends of the fingers called clubbing, which happens to patients with significant and longstanding lung disease.
Taking all these things together in a person with occupational or other exposure to asbestos, the doctor may be suspicious of mesothelioma and go on to order additional tests with that in mind. Otherwise, the doctor may be looking to find some other cause for a problem in the lungs.
If you have abdominal symptoms including nausea, vomiting, pain, bloating and swelling, or blockage but do not know about asbestos exposure, it is very likely the doctor will not even consider mesothelioma at the time of the first examination. You might have a very distended, rounded abdomen. The doctor may be able to
tell by various maneuvers that there is fluid in the abdomen. That is a sign of mesothelioma, but is more often caused by liver diseases like cirrhosis. There may be masses that the doctor can feel. The doctor will also check the lower body for any swelling.
With these findings, the doctor would most likely send you for laboratory tests and an ultrasound, although a CAT scan would be useful, depending on the exact findings. If you have a mesothelioma of the pericardium around the heart, you would appear to have heart failure. Even with a history of asbestos exposure, nothing in
the physical exam would necessarily alert the physician. If it is clear that you have fluid around the heart in association with asbestos exposure, mesothelioma would be suspected. The fluid would be detected most likely by an echocardiogram.
Men with the very rare mesothelioma of a layer of cells near the testicles appear to have a hernia. While the physical examination of every patient is important, in the case of mesothelioma, the diagnosis is unlikely to be made or even seriously considered until X-rays and other tests provide more information. The doctor will order a chest x-ray. The x-ray will be abnormal if you have a pleural mesothelioma. It may show a collection of fluid in the pleural space, between the lungs and chest wall. A one-side pleural effusion, especially in a person with asbestos exposure, will make your doctor think of mesothelioma.
Other tests might be CT scans or MRI scans of the area, which can give a better picture of where the problem is and how best to approach the area. If you have mesothelioma in your abdomen, you will probably also have scans. At some point, your doctor may suspect mesothelioma or some other cancer. In either case, your doctor will work with other doctors to make the diagnosis (see questions below).
In some places, your regular doctor may send you to an oncologist, who is a cancer specialist, to make sure your case is diagnosed properly. Much of the time, your regular doctor will help you through this process.
A biopsy, or sample of tissue, has to be obtained. This will be done in whatever manner is easiest for the patient. The sample will be analyzed, using chemical tests as well as stains to see the cells. Putting all of this together will make the diagnosis of pleural mesothelioma possible. Abdominal mesothelioma is even harder to diagnose. Again, if a patient has known asbestos exposure and symptoms of abdominal pain or intestinal
blockage, a doctor must think about mesothelioma.
A CT scan will probably be needed to make a preliminary diagnosis of abdominal mesothelioma. Biopsy again will be done in whatever manner is easiest for the patient. Mesothelioma is almost always diagnosed because it has already spread and caused symptoms. It is very rarely diagnosed early. If a patient does not know of asbestos exposure, and has a tumor mass, the diagnosis will probably not be suspected until a biopsy is obtained.
10. Are there any blood tests that might indicate that I have mesothelioma?
There are no blood tests that can diagnose mesothelioma at this time. There are a number of tests that can measure compounds in the blood that come from the mesothelioma. These cannot make the diagnosis. They are more often used to follow a patient’s response to treatment later on, when the doctors will look to see
if the blood levels of these substances are going up or down. There is active research trying to find blood tests to help diagnose mesothelioma.
Researchers are looking for chemicals that may come from mesothelioma cells and not normal cells. If a chemical from mesothelioma cells can be measured, it could indicate the presence of mesothelioma. More than one group of these chemicals has been found.
Soluble Mesothelin-Related Peptides, or SMRP, have been studied for some time. Levels of SMRP are high in patients with mesothelioma. There is a blood test available to measure levels of SMRP called a Mesomark Assay. It is an Enzyme-Linked Immunosorbent Assay, or ELISA test. SMRP levels can be high in patients long before they are diagnosed with mesothelioma. It is hoped that this can become a useful screening test for
patients at risk of mesothelioma - anyone with known asbestos exposure but with no symptoms.
At the current time it is not used for screening. It is only available as an FDA humanitarian-use device for the purpose of following patients treated for mesothelioma. Levels should drop after treatment, and can be watched to give an indication of whether or not the tumor is reoccurring or growing. Because mesothelioma is a rare disease, sometimes devices that can only benefit a small group of people with the disease will be allowed in use without the same lengthy testing period normally required. When there are only a small number of affected patients, there will not be enough numbers to do the statistical analysis recommended. There may also not be the research money that would be provided for devices expected to help a lot of people.
The FDA says: “A Humanitarian Use Device (HUD) is a device that is intended to benefit patients by treating or diagnosing a disease or condition that affects or is manifested in fewer than 4,000 individuals in the United States per year. A device manufacturer`s research and development costs could exceed its market returns for diseases or conditions affecting small patient populations. The HUD provision of the regulation provides an incentive for the development of devices for use in the treatment or diagnosis of diseases affecting these populations.
To obtain approval for an HUD, a humanitarian device exemption (HDE) application is submitted to FDA. An HDE is similar in both form and content to a premarket approval (PMA) application, but is exempt from the effectiveness requirements of a PMA. An HDE application is not required to contain the results of scientifically valid clinical investigations demonstrating that the device is effective for its intended purpose. The application, however, must contain sufficient information for FDA to determine that the device does not pose an unreasonable or significant risk of illness or injury, and that the probable benefit to health outweighs the risk of injury or illness from its use, taking into account the probable risks and benefits of currently available devices or alternative forms of treatment.
Additionally, the applicant must demonstrate that no comparable devices are available to treat or diagnose the disease or condition, and that they could not otherwise bring the device to market. An approved HDE authorizes marketing of the HUD. However, an HUD may only be used in facilities that have established a local institutional review board (IRB) to supervise clinical testing of devices and after an IRB has approved the use of the device to treat or diagnose the specific disease. The labeling for an HUD must state that the device is a humanitarian use device and that, although the device is authorized by Federal Law, the effectiveness of the device for the specific indication has not been demonstrated.” The FDA has only approved the Mesomark Assay to follow patients with known mesothelioma.
Osteopontin is also elevated in the blood of patients with mesothelioma. It is both a tumor marker and a potential way to diagnose the cancer. Research continues on both osteopontin and SMRPs. The term “tumor markers” refers to chemicals and substances made by tumor cells that can be measured. Often these chemicals will also be made by normal cells, but not in as much quantity.
While this often makes them unsuitable for diagnosis, the amount of these substances can be monitored to get an idea about the tumor, as to whether or not it is growing or responding to treatment. Soluble Mesothelin-Related Peptides and osteopontin are tumor markers for mesothelioma. Tumor markers for other cancers are probably more recognized by most people, such as PSA (prostate specific antigen) which has been used to follow prostate cancer, or CA 125 which is elevated in patients with ovarian cancer.
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