How Can I Learn More?

More Information From Your American Cancer Society

We have selected some related information that may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-ACS-2345.

• After Diagnosis (also available in Spanish)
• Caring for the Patient with Cancer at Home (available in Spanish only through the toll-free number)
• Pain Control: A Guide for People With Cancer and Their Families (available in Spanish only through the toll-free number)

The following book is available from the American Cancer Society. To learn about costs or place an order, either select a book below or call us at 1-800-ACS-2345.

• Caregiving: A Step-By-Step Resource for Caring for the Person with Cancer at Home
• Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment and Recovery
• The American Cancer Society’s Guide to Pain Control, Revised Edition

National Organizatons and Websites*

Agency for Toxic Substances and Disease Registry
Telephone: 1-888-422-8737
Internet address: www.atsdr.cdc.gov.

Environmental Protection Agency
Telephone: 1-202-260-2090
Internet address: www.epa.gov.

National Cancer Institute
Cancer Information Service 1-800-4-CANCER (1-800-422-6237)
Internet address: www.cancer.gov

Occupational Safety and Health Administration
Telephone: 1-800-321-6742
Internet address: www.osha.gov

*Inclusion on this list does not imply endorsement by the American Cancer Society.

The American Cancer Society is happy to address almost any cancer-related topic. If you have any more questions, please call us at 1-800-ACS-2345 at any time, 24 hours a day.

What’s New in Mesothelioma Research?

There is always research going on in the area of mesothelioma. Much of this research has focused on learning exactly how asbestos changes normal cells and their DNA to cause cancer. Understanding how these fibers produce cancer might help us find ways to prevent those changes.

Now that we know about the dangers of asbestos, we can limit or stop its use in homes, public buildings, and the workplace. But rules to protect people from asbestos are much less strict (or they do not exist at all) in some other countries.

Research is also going on to learn about the role (if any) of a virus (SV40) that has been linked to mesothelioma in some studies.

Because chemotherapy drugs have not worked very well against advanced mesothelioma, several new ideas are now being studied. These include drugs which kill cancers by stopping their blood supply and drugs which interfere with the ability of some cancer cells to grow quickly.

Doctors are always learning more about the best way to treat people with mesothelioma. Treatments that combine surgery, radiation therapy, and chemotherapy are now being studied and may provide the most promising option for some patients. New drugs, along with other types of treatments, are now being tested in clinical trials.

Another new approach is a type of gene therapy. This treatment uses special viruses that have been changed in the lab. The virus is injected into the space around the lungs where it infects the cancer cells. When this happens, the virus in turn injects a gene into the cancer that may help immune system cells to attack the cancer.

After Treatment

Moving On After Treatment

Completing treatment can be both stressful and exciting. You will be relieved to finish treatment, yet it is hard not to worry about cancer coming back. (When cancer returns, it is called recurrence.) This is a very common concern among those who have had cancer.

It may take a while before your confidence in your own recovery begins to feel real and your fears are somewhat relieved. You can learn more about what to look for and how to learn to live with the possibility of cancer coming back in the American Cancer Society document, Living with Uncertainty: The Fear of Cancer Recurrence, available at 1-800-ACS-2345.

Follow-up Care

After your treatment is over, it is very important to keep all follow-up appointments. During these visits, your doctors will ask about symptoms, do physical exams, and order blood tests or imaging studies such as CT scans or x-rays. Follow-up is needed to check for cancer recurrence or spread, as well as possible side effects of certain treatments. This is the time for you to ask your health care team any questions you need answered and to discuss any concerns you might have.

Almost any cancer treatment can have side effects. Some may last for a few weeks to several months, but others can be permanent. Don’t hesitate to tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them.

It is also important to keep medical insurance. Even though no one wants to think of their cancer coming back, it is always a possibility. If it happens, the last thing you want is to have to worry about paying for treatment. Should your cancer come back the American Cancer Society document, When Your Cancer Comes Back: Cancer Recurrence, gives you information on how to manage and cope with this phase of your treatment. You can get this document by calling 1-800-ACS-2345.

Seeing a New Doctor

At some point after your cancer diagnosis and treatment, you may find yourself in the office of a new doctor. Your original doctor may have moved or retired, or you may have moved or changed doctors for some reason. It is important that you be able to give your new doctor the exact details of your diagnosis and treatment. Make sure you have the following information handy:

• a copy of your pathology report from any biopsy or surgery
• if you had surgery, a copy of your operative report
• if you were hospitalized, a copy of the discharge summary that every doctor must prepare when patients are sent home from the hospital
• finally, since some cancer-treatment drugs can have long-term side effects, a list of your drugs, drug doses, and when you took them

Lifestyle Changes to Consider During and After Treatment

Having cancer and dealing with treatment can be time-consuming and emotionally draining, but it can also be a time to look at your life in new ways. Maybe you are thinking about how to improve your health over the long-term.

Make Healthier Choices

Think about your life before you learned you had cancer. Were there things you did that might have made you less healthy? Maybe you drank too much alcohol, or ate more than you needed, or smoked, or didn’t exercise very often.

Now is not the time to feel guilty or to blame yourself. However, you can start making changes today that can have positive effects for the rest of your life. Not only will you feel better but you will also be healthier.

You can start by working on those things that you feel most concerned about. Get help with those that are harder for you. For instance, if you are thinking about quitting smoking and need help, call the American Cancer Society’s Quitline^® tobacco cessation program at 1-800-ACS-2345.

Diet and Nutrition

Eating right can be a challenge for anyone, but it can get even tougher during and after cancer treatment. If you are still in treatment and are having eating problems related to your treatment, please ask for a copy of our Nutrition for the Person with Cancer.

One of the best things you can do after treatment is to put healthy eating habits into place. You will be surprised at the long-term benefits of some simple changes, like increasing the variety of healthy foods you eat. Try to eat 5 or more servings of vegetables and fruits each day. Choose whole grain foods instead of white flour and sugars. Try to limit meats that are high in fat. Cut back on processed meats like hot dogs, bologna, and bacon. If you drink alcohol, limit yourself to 1 or 2 drinks a day at the most. And don't forget to get some type of regular exercise. The combination of a good diet and regular exercise will help you maintain a healthy weight and keep you feeling more energetic.

Rest, Fatigue, Work, and Exercise

Fatigue is a very common symptom in people being treated for cancer. This is often not an ordinary type of tiredness but a “bone-weary” exhaustion that doesn’t get better with rest. For some, this fatigue lasts a long time after treatment, and can discourage them from physical activity. However, exercise can actually help you reduce fatigue.

If you are ill and need to be on bed rest during treatment, it is normal to expect your fitness, endurance, and muscle strength to decline some. Physical therapy can help you maintain strength and range of motion in your muscles, which can help fight fatigue and the sense of depression that sometimes comes with feeling so tired.

Any program of physical activity should fit your own situation. Talk with your health care team before starting, and get their opinion about your exercise plans. Then, try to get an exercise buddy so that you’re not doing it alone.

If you are very tired, though, you will need to balance activity with rest. It is okay to rest when you need to.(For more information about fatigue, please see the publication Cancer Related Fatigue and Anemia Treatment Guidelines for Patients.

Exercise can improve your physical and emotional health.

• It improves your cardiovascular (heart and circulation) fitness.
• It strengthens your muscles.
• It reduces fatigue.
• It lowers anxiety and depression.
• It makes you feel generally happier.
• It helps you feel better about yourself.

And long term, we know that exercise plays a role in preventing some cancers. The American Cancer Society recommends that adults take part in at least one physical activity for 30 minutes or more on 5 days or more of the week. Children and teens are encouraged to try for at least 60 minutes a day of energetic physical activity on at least 5 days a week.

How About Your Emotional Health?

Once your treatment ends, you may find yourself overwhelmed by emotions. This happens to a lot of people. You may find that you think about the effect of your cancer on your family, friends, and career. You may also begin to re-evaluate your relationship with your spouse or partner. Unexpected issues may also cause concern -- for instance, as you become healthier and have fewer doctor visits, you will see your health care team less often. That can be a source of anxiety for some.

This is an ideal time to seek out emotional and social support. You need people you can turn to for strength and comfort. Support can come in many forms: family, friends, cancer support groups, church or spiritual groups, online support communities, or individual counselors.

The cancer journey can feel very lonely. It is not necessary or realistic to go it all by yourself. And your friends and family may feel shut out if you decide not include them. Let them in -- and let in anyone else who you feel may help. If you aren’t sure who can help, call your American Cancer Society at 1-800-ACS-2345 and we can put you in touch with an appropriate group or resource.

You can’t change the fact that you have had cancer. What you can change is how you live the rest of your life -- making healthy choices and feeling as well as possible, physically and emotionally.

Treatment

Treatment for Mesothelioma

This information represents the views of the doctors and nurses serving on the American Cancer Society's Cancer Information Database Editorial Board. These views are based on their interpretation of studies published in medical journals, as well as their own professional experience.

The treatment information in this document is not official policy of the Society and is not intended as medical advice to replace the expertise and judgment of your cancer care team. It is intended to help you and your family make informed decisions, together with your doctor.

Your doctor may have reasons for suggesting a treatment plan different from these general treatment options. Don't hesitate to ask him or her questions about your treatment options.

If you have mesothelioma, you doctor will suggest one or more ways to treat the cancer. This is an important decision and you should take time to think about all of your choices.

You may want to get a second opinion. A second opinion can give you more information and help you feel more secure about the treatment choice you make. Also, some insurance companies require a second opinion before they will agree to pay for certain treatments.

Because this is such a rare cancer, it has been hard for doctors to compare the value of different treatments. Since many doctors have little or no experience treating this disease, you may be referred to a specialist at a large medical center. Treatment options include surgery, chemotherapy and radiation therapy. One problem with treating mesothelioma is that it does not grow as a single mass. Instead it tends to spread along surfaces, nerves, and blood vessels. This makes it hard for one or more types of treatment to get rid of all of the disease .

Surgery

Surgery for some types of mesothelioma might be done to try to bring about a cure or to relieve symptoms. Surgery to relieve symptoms (called palliative surgery) is often done in cases where the tumor has already spread, or when the patient is too ill to withstand more involved surgery.

To attempt a cure, extensive surgery might be needed. This might be done if the patient is in good health (other than the cancer) and if it seems as if the tumor is confined to one place. While surgery is not likely to cure the cancer, it might extend the patient's life.

Unfortunately, the cancer has often spread to other places before it is found. So the role of surgery in treating this cancer is open to debate. If your doctor recommends surgery, you can ask for more details about the operation and what the goal is.

In many cases, methods other than surgery are used to relieve symptoms. Fluid in the chest can be removed by placing a needle into the chest cavity and drawing the fluid out. Sometimes talc or drugs that cause scarring are injected into the chest to keep the fluid from coming back. A similar method can be used to remove fluid around the abdomen or heart. While these methods can relieve symptoms, they are not meant to cure the cancer.

Chemotherapy

Chemotherapy refers to the use of drugs to kill cancer cells. The drugs can be swallowed in pill form or they can be injected by needle into a vein or muscle. Once the drugs enter the bloodstream, they spread throughout the body. In treating mesothelioma, these drugs may also be given directly into the chest (or abdominal) cavity at the site of the tumor. More than one drug may be used to make the treatment more effective.

Depending on the type and stage of the cancer, chemotherapy may be given as the main treatment or along with surgery. Chemotherapy for this disease is given to relieve symptoms, not to cure the cancer.

Chemotherapy can have some side effects. These side effects will depend on the type of drugs given, the amount taken, and how long treatment lasts. Side effects could include the following:

• nausea and vomiting
• loss of appetite
• hair loss
• mouth sores
• an increased risk of infection
• bleeding or bruising after minor cuts
• tiredness
• shortness of breath

Most side effects go away once treatment is over. Anyone who has problems with side effects should talk with their doctor or nurse, as there are often ways to help.

Radiation Therapy

Radiation therapy is treatment with high energy rays (such as x-rays) to kill or shrink cancer cells. The radiation may come from outside the body (external radiation) or from radioactive materials placed directly in the tumor (internal or implant radiation). External radiation is the preferred type for mesothelioma. It is given in the same way as the type of x-ray used to find a broken bone, although it takes longer. Treatments are usually given daily (5 days a week) for 3 to 5 weeks.

As a rule, radiation treatment doesn't help much for mesothelioma, and the need to treat a large part of the lung leads to problems with lung damage. But radiation can be used along with surgery to kill small areas of cancer that cannot be seen and removed during surgery. It can also be used as a way to ease symptoms such as shortness of breath, pain, bleeding, or trouble with swallowing. If fluid builds up in the chest, radioactive drugs can be put into the space after the fluid is drawn out. This might help keep the fluid from coming back.

There can be side effects from radiation. Most of these will go away after a short while. The skin in the area treated may look sunburned and then become darker. You may also feel tired. Be sure to talk with your doctor about any side effects. Often there are medicines or other methods that will help.

Clinical Trials

Studies of promising new treatments are known as clinical trials. A clinical trial is done only when there is some reason to believe that the new treatment may be of value to the patient. Clinical trials are needed in order to find new and better ways to treat cancer. Treatments used in clinical trials are often found to have real benefits. The main questions the researchers want to answer are:

• Is this treatment helpful?
• Does it work better than the one we're now using?
• What side effects does it cause?
• Do the benefits outweigh the side effects?
• Which patients are most likely to find this treatment helpful?

Clinical trials are carried out in steps called phases. Each phase is designed to answer certain questions

Phase I clinical trials look at the best way to give a new treatment and how much of it can be given safely. The main purpose of a phase I study is to test the safety of the new drug.

Phase II clinical trials are designed to see if the drug works. Patients are given the highest dose that doesn't cause serious side effects and then watched closely to see if there is an effect on the cancer.

Phase III clinical trials compare the new treatment with standard treatment. Large numbers of patients are divided into two groups. The control group receives standard treatment and the other group receives the new treatment. Everyone is closely watched to see which treatment is more effective. The study is stopped if the side effects are too severe or if one group has much better results than the other.

If you are in a clinical trial, you will have a team of experts watching your progress very carefully. However, there are some risks. No one knows in advance if the treatment will work or exactly what side effects will occur. That is what the study is designed to find out. Keep in mind, though, that even standard treatments have side effects.

Taking part in a clinical trial is completely up to you. Even after joining a clinical trial, you are free to drop out of the study at any time, for any reason. Taking part in the study will not prevent you from getting other medical care you may need.

The American Cancer Society offers a service to patients and their families that will help match them with a clinical trial. We will ask you about your cancer, where you live, and whether you can travel or not. Then our computer will give you a list of clinical trials that might meet your needs.

To use this service, please call our toll-free number (1-800-303-5691) or log on to our Web site at http://clinicaltrials.cancer.org.

The National Cancer Institute has current information about NCI-sponsored clinical trials. You can call the NCI at 1-800-4-CANCER or visit their Web site at www.cancer.gov/clinicaltrials.

Complementary and Alternative Therapies

You may hear about different kinds of treatment from your family and friends. You can find people who will offer all sorts of things, such as vitamins, herbs, stress reduction, acupuncture, and more. There is a great deal of interest today in complementary and alternative treatments for cancer. Before changing your treatment or adding any of these methods, be sure to talk to your doctor or nurse. Some methods can be safely used along with standard medical treatment. Others, however, can interfere with standard treatment or cause serious side effects. That is why it's important to talk openly with your doctor. More information about complementary and alternative methods of cancer treatment is available through our toll-free number or on our Web site.

Early Detection, Diagnosis, Staging

How Is Mesothelioma Found?

As a rule, a chest x-ray is not useful in finding mesothelioma early. One test being studied is a blood test. This test measures the levels in the blood of a certain protein that is higher in people who have lung damage due to asbestos. It is even higher if the person has mesothelioma.

Early symptoms of mesothelioma can be very general. Thus, they are often ignored. Most people with this type of cancer have symptoms for only 2 to 3 months before the cancer is found.

Symptoms of pleural mesothelioma (lining of the chest) can include:

• pain in the lower back or at the side of the chest
• shortness of breath
• trouble swallowing
• hoarseness
• cough
• fever
• sweating
• tiredness
• weight loss
• swelling of the face and arms
• muscle weakness

Symptoms of peritoneal mesothelioma (lining of the abdominal cavity) include:

• belly pain
• weight loss
• nausea
• vomiting
• fluid or a lump in the abdomen

Of course, these same symptoms can also be caused by other minor ailments. But if you have worked with asbestos and you have any of these symptoms, you should see your doctor right away.

If there is reason to suspect you might have mesothelioma, the doctor will ask you questions about your health and do a complete physical exam. The exam can help tell if you have fluid in the chest, abdomen, or heart. This fluid can be a sign of mesothelioma. Then one or more of the methods below can be used to find out whether you really have cancer.

Imaging Tests

These tests allow the doctor to see a picture of the inside of your body. These could include x-rays, CT scans (computed tomography), MRI (magnetic resonance imaging), or PET scans.

Chest x-ray: The x-rays might show thickening of the lining of the lungs or other signs of asbestos exposure leading to mesothelioma.

CT scans: A CT scan (also known as a CAT scan) is like an x-ray but it produces detailed cross-sectional images of your body. Instead of taking one picture, as does a regular x-ray, a CT scanner takes many pictures as it rotates around you. A computer then combines these pictures into an image of a slice of your body.

Often after the first set of pictures is taken, you will receive an intravenous injection of dye that helps better outline parts of your body. A second set of pictures is then taken. You will need an intravenous (IV) line through which the dye can be given. Some people are allergic to the dye and get hives, a flushed feeling, or, rarely, more serious reactions like trouble breathing and low blood pressure. Be sure to tell your doctor if you have ever had a reaction to any dye used for x-rays.

CT scans take longer than regular x-rays, and you need to lie still on a table while they are being done. But they are getting faster and your scan might be pleasantly short.

CT scans are often used to first find the mesothelioma, and they are helpful in finding out how far it has spread.

PET scan: A PET scan uses glucose (a form of sugar) that contains a radioactive substance. Cancer cells in the body absorb large amounts of the radioactive sugar and a special camera can detect the radioactivity. This test, which is still being studied, can help tell whether a thickening of the tissues is cancer or just scar tissue. It can also spot the spread of cancer.

MRI scans: This test uses radio waves and strong magnets instead of x-rays. The energy from the radio waves is absorbed and then released in a pattern formed by the type of tissue and by certain diseases. A computer translates the pattern of radio waves given off by the tissues into a very detailed image of parts of your body.

A contrast material might be injected just as with CT scans. MRI scans provide the same kind of information that CT scans do, but sometimes they can provide a different and more helpful picture.

MRI scans are useful in looking at the diaphragm (the thin muscle at the bottom of the lung cage that goes up and down during breathing). The mesothelioma may have spread to the diaphragm.

MRI scans take longer than CT scans – often up to an hour. Also, you are placed inside a narrow tube, which is confining and can upset people with a fear of enclosed spaces. The machine makes a thumping noise, and some places will provide headphones with music to block out the noise.

While there is a blood test to track the progress of the disease during and after treatment, it is not really useful in telling whether a person has this cancer. But a high level of a certain protein (osteopontin) is a cause for concern.

Fluid or tissue samples may be taken from the chest, stomach, or heart area with a needle and sent to the lab to see if cancer cells are present.

Other methods of looking inside the body involve making a small cut (incision) in the chest or stomach area and then using a small tube with a video camera to allow the doctor to look directly at the area in question and take a tissue sample.

In another approach, the doctor can insert a lighted tube through the mouth and into the chest. This is called a bronchoscopy (bron-kahs-kuh-pee). If the tube is placed under the chest bone and then moved down into the chest, it is called a mediastinoscopy (me-de-uh-stine-AHS-kuh-pee).

Surgery allows the doctor to remove a larger sample of tumor or, sometimes, the whole tumor.

It is often hard to identify mesothelioma by looking at the cells (or even tissue) from the fluid around the lungs, stomach, or heart. So your doctor may want to do other tests as well. Sometimes an electron microscope is used to look at cells in greater detail.

After the Tests: Staging

Staging is the process of finding out how far the cancer has spread. This is very important because your treatment and the outlook for your recovery depend on the stage of your cancer.

At this time, there is a staging system only for mesothelioma around the lung (pleural mesothelioma). The AJCC (American Joint Committee on Cancer) staging system uses Roman numerals from I to IV (1 to 4) for the different stages. In general, the lower the number, the less the cancer has spread. A higher number, such as stage IV, means a more serious cancer.

After looking at your test results, the doctor will tell you the stage of your cancer. Be sure to ask your doctor to explain your stage in a way you understand. This will help you both decide on the best treatment for you.

While the stage of this cancer is important in looking at a patient's chances for survival, other factors should also be taken into account. Some of these factors include being too sick to perform the normal tasks of daily life, chest pain, shortness of breath, weight loss, high levels of a substance in the blood called LDH, low red blood cell count, high white blood cell count and others. Most people with all of these factors usually die within 6 months. Few live two years. Most people with none of these factors will live at least one year and have a 40% chance of living 2 years.

Risk Factors & Prevention

What Causes Mesothelioma? Can It Be Prevented?

A risk factor is anything that increases a person's chance of getting a disease such as cancer. Different cancers have different risk factors. Some risk factors, such as smoking, can be controlled. Others, like a person's age or family history, can't be changed. But having a risk factor, or even several, doesn’t mean that a person will get the disease.

The main risk factor for mesothelioma is contact with asbestos. In the past, asbestos was used in insulation as well as in other products such as floor tiles, door gaskets, roofing, patching compounds, and more. Since asbestos is a natural mineral, it can also be found in dust and rocks in certain parts of the United States. Most use stopped after 1989, but it is still used in some products.

When asbestos fibers are breathed in, some can travel to the ends of the small air passages and reach the lining of the lungs. There they can damage the cells lining the lungs, which can lead to pleural mesothelioma. If swallowed, these fibers can also reach the lining of the abdominal cavity where they play a part in causing peritoneal mesothelioma.

People who may be at risk for asbestos exposure include some miners, factory workers, makers of insulation, railroad workers, ship builders, gas mask makers, and construction workers. Several studies have shown that family members of people exposed to asbestos at work have an increased risk of mesothelioma because asbestos fibers are carried home on the clothes of the workers.

The risk of getting mesothelioma depends on how much asbestos a person was exposed to and for how long. Mesotheliomas take a long time to develop. The time between the first exposure and finding the disease is often between 20 and 50 years. Another important point about asbestos is that the risk of mesothelioma does not drop over time. The risk appears to be lifelong and it does not go down.

There is some evidence linking Thorotrast, a material once used in certain x-rays, to mesothelioma. But Thorotrast has not been used for many years.

Some recent studies have raised the suggested that infection with simian virus 40 (SV40) might increase the risk of mesothelioma. Some polio vaccines prepared between 1955 and 1963 were contaminated with SV40. Research into this question is still going on.

While tobacco smoke has not been shown to cause mesothelioma, smokers exposed to asbestos have a much higher risk of lung cancer. More asbestos workers die of lung cancer than of mesothelioma.

Can Mesothelioma Be Prevented?

The best way to prevent this disease is to avoid contact with asbestos in homes, public buildings, and at work. People who could be exposed to asbestos at work include miners, factory workers, insulation workers, railroad workers, ship builders, makers of gas masks, and construction workers.

If there is a chance of exposure, say, in fixing up old buildings, then workers should take special measures to protect themselves. If you live in an older home, there may be asbestos in the insulation or in other materials. An expert can check your home to see if there is any danger. If so, you might decide to have the asbestos removed. You should hire a qualified person to do this job. You should not attempt to do it yourself.

How Many People Get Mesothelioma?

Mesothelioma is fairly rare. There are about 2,000-3,000 new cases per year in this country. Most people who get mesothelioma are over 65 years old. Men are much more likely than women to get this disease.

Although rare, this is a serious disease. It is often advanced before symptoms appear, so the outlook is not as good as it is for cancers that are found earlier. The average survival time is about 1 to 2 years.