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Mesothelioma - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Mesothelioma. To see other pages, use the menu. Think of that menu as a roadmap to this full guide.

About cancer

Cancer begins when healthy cells change and grow out of control, forming a mass called a tumor. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.

About mesothelioma

Mesothelioma is a rare cancer that begins in the lining of different internal organs of the body.

  • Approximately 75% to 80% of mesotheliomas begin in the lining surrounding the lungs, called pleural mesothelioma. Pleural mesothelioma begins in the chest cavity, but it does not start in the lungs. As such, it is often incorrectly grouped with lung cancer.

  • Peritoneal mesothelioma makes up about 10% to 20% of mesotheliomas. This type of mesothelioma begins in the tissue surrounding the abdominal area, called the peritoneum.

  • The rarest types of mesothelioma include:

    • Mesothelioma that begins in the lining around the heart, called the pericardium

    • Mesothelioma that begins in the lining around a man’s testicles, called the tunica vaginalis

Types of mesothelioma

There are 3 main types of mesothelioma:

  • Epithelioid type. About 70% of people diagnosed with mesothelioma have the epithelioid type. Epithelioid mesothelioma may grow slower and chemotherapy often works better for this type.

  • Sarcomatoid type. Between 7% to 15% of people diagnosed with mesothelioma have the sarcomatoid type. People with this type often have a lower chance of having treatment work compared with the other 2 types. Standard chemotherapy for sarcomatoid mesothelioma often does not work well.

  • Mixed, or biphasic, type. Between 10% to 20% of people diagnosed with mesothelioma have the mixed type. The term “mixed” or “biphasic” means that the cancer contains both epithelioid and sarcomatoid types. Treatment does not work as well for this type when compared with the epithelioid type. However, treatment for this type often works better than for the sarcomatoid type.

The next section in this guide is Statistics. It helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu to choose another section to continue reading this guide.

Mesothelioma - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find information about how many people are diagnosed with this type of cancer each year. You will also learn some general information on surviving the disease. Remember, survival rates depend on several factors. To see other pages, use the menu.

It is estimated that about 3,000 people are diagnosed with mesothelioma each year in the United States. Mesothelioma occurs more often in men. The average age for a pleural mesothelioma diagnosis is 69. 

The number of people diagnosed with mesothelioma is no longer increasing as it has been in previous decades and may now be decreasing. The average survival time is defined as the amount of time that a person can live after the cancer is found. In patients with pleural mesothelioma who are not able to receive surgery, the median survival time is 12 months. Median is the midpoint, which means that about half of people with this type of cancer live longer and about half live for a shorter time.

The length of time a person lives after being diagnosed with mesothelioma depends on many factors, including the patient’s age and the type of mesothelioma. In particular, some patients with peritoneal mesothelioma have a tumor that grows very slowly and patients with peritoneal mesothelioma often have longer survival times.

It is important to remember that statistics on how many people survive this type of cancer are an estimate. The estimate comes from data based on thousands of people with this cancer in the United States each year. So, your own risk may be different. Doctors cannot say for sure how long anyone will live with mesothelioma. Also, experts measure the survival statistics every 5 years. This means that the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Learn more about understanding statistics.

Source: American Cancer Society.

The next section in this guide is Risk Factors. It explains what factors may increase the chance of developing this disease. Or, use the menu to choose another section to continue reading this guide.

Mesothelioma - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of cancer. To see other pages, use the menu.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do. However, knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

The following factors can raise a person’s risk of developing mesothelioma:

  • Asbestos exposure. Between 70% to 80% of people diagnosed with mesothelioma have been exposed to asbestos. Asbestos is a group of natural minerals found in the earth. Because of its strong, flexible fibers and fire-proof properties, asbestos was once commonly added to cement, insulation, roof shingles, and other products. People involved in making products containing asbestos or installing or maintaining these products can breathe in or swallow the asbestos fibers. These fibers can also be carried in asbestos dust on clothing or personal items, exposing family members of the workers to potentially high levels of the minerals. Current safety regulations require people who work with asbestos to wear protective equipment and to shower and change clothes before leaving the workplace.

  • Smoking. By itself, smoking does not increase the risk of mesothelioma, but the combination of smoking and asbestos exposure can highly increase the risk of certain types of cancer in the lungs.

  • Radiation exposure. Radiation exposure may cause mesothelioma, such as when a patient has previously received radiation therapy for lymphoma.

  • Zeolite exposure. Exposure to a type of mineral called zeolite may cause mesothelioma.

  • Genetics. About 1% of people with mesothelioma have inherited mesothelioma, meaning the risk of developing the disease was passed from parent to child within a family. Usually, it is due to a mutation or change in a gene called BAP1.

Even though some people with mesothelioma have no known risk factors, many people who develop mesothelioma have been exposed to asbestos. Therefore, it is important to always wear protective gear and follow safety precautions when working with asbestos.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems this disease can cause. Or, use the menu to choose another section to continue reading this guide.

Mesothelioma - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu.

People with mesothelioma may experience the following symptoms or signs. Sometimes, people with mesothelioma do not have any of these changes. Or, the cause of a symptom may be another medical condition that is not cancer. Often, symptoms of mesothelioma may not appear until years or even decades after asbestos exposure.

If mesothelioma is in the chest area, called pleural mesothelioma, the symptoms may include:

  • Shortness of breath, caused by thickening of the lining around the lung reducing how well the lungs can expand

  • Build-up of fluid in the chest, called a pleural effusion

  • Chest pain

If mesothelioma is in the abdominal area, called peritoneal mesothelioma, the symptoms may include:

  • Abdominal pain

  • Abdominal swelling from a buildup of fluid, called ascites

  • Bowel obstruction

General symptoms of mesothelioma may include:

  • Weight loss

  • Fatigue

  • Problems with blood clotting

  • Anemia, which is a low level of red blood cells

  • Fever

  • Night sweats

If you are concerned about any changes you experience, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If cancer is diagnosed, relieving symptoms remains an important part of cancer care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about symptoms you experience, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu to choose another section to continue reading this guide.

Mesothelioma - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. To see other pages, use the menu.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know whether an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

This list describes options for diagnosing this type of cancer, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your signs and symptoms

  • Your age and medical condition

  • The results of earlier medical tests

The diagnosis of mesothelioma is challenging, and it can be confused with other diseases, such as lung cancer.

Many people first notice symptoms of mesothelioma when they develop fluid in the space around the lungs, a condition called pleural effusion, or in the abdomen, called ascites. When this fluid is removed, it can be analyzed to find out if there are cancer cells in it. However, testing this fluid is usually not the only test needed to diagnose the disease. A biopsy is usually needed to diagnose mesothelioma.

  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. A biopsy is usually needed to confirm a diagnosis of mesothelioma. Sometimes, a needle can be used to get a sample of the lining. More often the doctor removes a tissue sample by using a thin, lighted tube inserted through a small incision in the body. This is called a video thoracoscopy when used to get samples from inside the chest or a laparoscopy when used to get tissue samples from inside the abdomen.

The following procedures may be used to help develop a treatment plan:

  • Physical examination. A physical examination may include:

    • A look at the person’s medical history and his or her family's past illnesses

    • Possible risk factors, including asbestos exposure

    • An examination for other signs of cancer

  • Lung function tests. Also called pulmonary function tests or PFTs, lung function tests evaluate how much air the lungs can hold, how quickly air can move in and out of the lungs, and how well the lungs add oxygen and remove carbon dioxide from the blood.

  • X-ray. An x-ray is a way to create a picture of the structures inside of the body using a small amount of radiation. It is not the main way to diagnose mesothelioma. But, a chest x-ray can sometimes help doctors determine whether a person has mesothelioma and where it is located.

  • Computed tomography (CT or CAT) scan. A CT scan creates a 3-dimensional picture of the inside of the body using x-rays taken from different angles. A computer then puts these images into a detailed, cross-sectional view that shows abnormalities or tumors. A CT scan can also be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill to swallow.  

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can also be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill to swallow.

  • Positron emission tomography (PET) or PET-CT scan. A PET scan is usually combined with a CT scan (see above), called a PET-CT scan. However, you may hear your doctor refer to this procedure just as a PET scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radiolabeled sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radiolabeled  substance. A scanner then detects this substance to produce images of the inside of the body.

After diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is cancer, these results also help the doctor describe the cancer; this is called staging.

The next section in this guide is Stages. It explains the system doctors use to describe the extent of the disease. Or, use the menu to choose another section to continue reading this guide.

Mesothelioma - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. To see other pages, use the menu.

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancers.

This section describes the staging system for pleural mesothelioma. Currently, there is no standard staging system for peritoneal mesothelioma. Your doctor will talk to you about the extent of disease and what it means.

TNM staging system

One tool that doctors use to describe the stage is the TNM system. Doctors use the results from diagnostic tests and scans to answer these questions:

  • Tumor (T): How large is the primary tumor? Where is it located?

  • Node (N): Has the tumor spread to the lymph nodes? If so, where and how many?

  • Metastasis (M): Has the cancer metastasized to other parts of the body? If so, where and how much?

The results are combined to determine the stage of cancer for each person. There are 4 stages: stages I through IV (1 through 4). The stage provides a common way of describing the cancer, so doctors can work together to plan the best treatments.

Here are more details on each part of the TNM system for pleural mesothelioma:

Tumor (T)

Using the TNM system, the "T" plus a letter and/or number (0 to 4) is used to describe the stage of the tumor. Some stages are also divided into smaller groups that help describe the tumor in even more detail. This helps the doctor develop the best treatment plan for each patient. Specific tumor stage information is listed below:

T1: The tumor has grown into the thin membrane that lines the lung and inner chest walls, called the pleura, on 1 side of the body.

T1a: The tumor has grown into the parietal pleura on 1 side of the body. The parietal pleura is the thin lining of tissue around the chest wall. The tumor has not grown into the visceral pleura, which is the thin lining around the lung.

T1b: The tumor has grown into the parietal pleura and the visceral pleura on 1 side of the body.

T2: The tumor has grown into any of the pleural surfaces on 1 side of the body and has grown into either the lung or the muscle that separates the chest cavity from the abdomen called the diaphragm.

T3: The tumor has grown into any of the pleural surfaces on 1 side of the body, with at least 1 of the following:

  • Growth to the membrane that surrounds the thorax, called the endothoracic fascia

  • Growth to the area of the chest between the lungs, called the mediastinum

  • Growth to a single area of the muscles of the chest wall

  • Minimal growth to the lining around the heart, called the pericardium

T4: The tumor has grown into any of the pleural surfaces on 1 side of the body, and has grown to at least 1 of the following areas:

  • Several areas of the chest wall with or without growth into the rib

  • Through the diaphragm to the abdominal cavity

  • Any mediastinal organ(s), such as large blood vessels

  • The pleura on the opposite side of the body

  • The spine

  • Though the pericardium which may cause fluid buildup, or growth to the heart

Node (N)

The “N” in the TNM staging system stands for lymph nodes, the tiny, bean-shaped organs that help fight infection. Lymph nodes near the chest are called regional lymph nodes. Lymph nodes in other parts of the body are called distant lymph nodes.

NX: The regional lymph nodes cannot be evaluated.

N0 (N plus zero): Cancer has not spread to the regional lymph nodes.

N1: Cancer has spread to the bronchopulmonary lymph nodes that are located within the lungs on 1 side of the body and/or hilar lymph node(s) that are located near the larger airways of the lungs.

N2: Cancer has spread to the subcarinal lymph node(s) surrounding the windpipe and/or the mediastinal lymph node(s) located in the center of the chest between the lobes of the lungs on 1 side of the body, including the internal mammary lymph nodes near the breast bone on 1 side of the body and the peridiaphragmatic lymph nodes surrounding the diaphragm.

N3: Cancer has spread to the mediastinal lymph nodes on both sides of the body, the internal mammary lymph nodes and/or supraclavicular lymph node(s) above the collar bone on 1 or both sides of the body.

Metastasis (M)

The “M” in the TNM system indicates whether the cancer has spread to other parts of the body, called distant metastasis.

M0 (M plus zero): Cancer has not spread to other parts of the body.

M1: Cancer has spread to other parts of the body.

Cancer stage grouping

Doctors assign the stage of the cancer by combining the T, N, and M classifications.

Stage I: The tumor has grown into the parietal pleura on 1 side of the body and may or may not have grown into the visceral pleura. It has not spread to the lymph nodes or other parts of the body (T1, N0, M0).

Stage IA: The tumor has grown into the parietal pleura on 1 side of the body. It has not grown into the visceral pleura or spread to the lymph nodes or other parts of the body (T1a, N0, M0).

Stage IB: The tumor has grown into the parietal pleura on 1 side of the body and the visceral pleura. It has not spread to the lymph nodes or other parts of the body (T1b, N0, M0).

Stage II: The tumor is defined as T2 (see above). It has not spread to the lymph nodes or throughout the body (T2, N0, M0).

Stage III: Any of the following conditions:

  • The tumor is defined as T1 or T2 (see above). Cancer has spread to the lymph nodes described above as N1 or N2 but not to other parts of the body (T1 or T2, N1 or N2, M0).

  • The tumor is defined as T3 (see above). It may or may not have spread to lymph nodes and has not spread to other parts of the body (T3, N0-2, M0).

Stage IV: Any of the following conditions:

  • The tumor is defined as T4 (see above). Cancer may or may not have spread to the lymph nodes and has not spread to other parts of the body (T4, any N, M0).

  • Cancer has spread to lymph nodes described above as N3 but not to other parts of the body (any T, N3, M0).

  • Cancer may or may not have spread to the lymph nodes and has spread to other parts of the body (any T, any N, M1).

Recurrent: Recurrent cancer is cancer that has come back after treatment. It may return in the chest or in another part of the body. If the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Used with permission of the American Joint Committee on Cancer (AJCC), Chicago, Illinois. The original source for this material is the AJCC Cancer Staging Manual, Seventh Edition published by Springer-Verlag New York, www.cancerstaging.net.

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu to choose another section to continue reading this guide.  

Mesothelioma - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will learn about the different ways doctors use to treat people with this type of cancer. To see other pages, use the menu.

This section tells you the treatments that are the standard of care for this type of cancer. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn if it is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections.

Treatment overview

In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. Cancer care teams also include a variety of other health care professionals, including physician assistants, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.

Descriptions of the most common treatment options for both pleural and peritoneal mesothelioma are listed below. Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the patient’s preferences and overall health. Your care plan may also include treatment for symptoms and side effects, an important part of cancer care. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. A surgical oncologist is a doctor who specializes in treating cancer using surgery. The type of surgery for mesothelioma depends on the stage and location of the cancer.

  • Pleural mesothelioma. For patients with pleural mesothelioma, the surgeon may remove the cancerous lining around the lung. This procedure is called a pleurectomy. Generally, the tumor cannot be completely removed with a pleurectomy. A more aggressive surgery for pleural mesothelioma is called an extrapleural pneumonectomy. This is the removal of the lining of the lung, the entire lung, a portion of the diaphragm, and often a portion of the lining around the heart. This is a difficult surgery and is recommended only after the doctor has reviewed many factors, including the patient’s overall health and the stage of the disease. Sometimes, additional treatment such as radiation therapy or chemotherapy may be recommended (see below).

  • Peritoneal mesothelioma. Patients with peritoneal mesothelioma may often have a surgery called an omentectomy. An omentectomy is the removal of the lining around the abdominal organs. Since patients with peritoneal mesothelioma often have tumors throughout the entire abdomen, it is difficult to remove all of them. The goal of surgery is to leave behind tumors that are as small as possible. After surgery, chemotherapy is often placed directly into the abdomen (see below).

Talk with your doctor before surgery about possible side effects based on the type of surgery you’ll be having, including what can be done to relieve or reduce those side effects. Learn more about the basics of cancer surgery.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation, which is radiation given from a machine outside the body. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Side effects from radiation therapy include tiredness, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished.

  • Pleural mesothelioma. It is challenging to treat pleural mesothelioma with radiation therapy because of the risk of damaging the lung. When 1 of the 2 lungs has been surgically removed, radiation therapy is often given to the chest cavity to lower the risk of the mesothelioma returning in the chest. For example, this approach may be used after an extrapleural pneumonectomy (see Surgery, above). For some patients, radiation therapy may be given to a smaller area to help relieve symptoms such as pain (see Getting care for symptoms and side effects, below).

  • Peritoneal mesothelioma. For patients with peritoneal mesothelioma, radiation therapy to the entire abdomen causes severe side effects and is not done. If a patient has pain in a specific area, radiation therapy may be an option to help relieve pain (see Getting care for symptoms and side effects, below).

Learn more about the basics of radiation therapy.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication.

Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give systemic chemotherapy for mesothelioma include an intravenous (IV) tube placed into a vein using a needle. Chemotherapy can also be given directly to the abdomen after surgery for peritoneal mesothelioma, called intraperitoneal chemotherapy.

A systemic chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or combinations of different drugs at the same time.

  • Pleural mesothelioma. The chemotherapy treatment best studied for patients who haven’t yet received treatment is the combination of pemetrexed (Alimta) and cisplatin (Platinol) or carboplatin (Paraplatin). These medications are given by IV every 3 weeks. The most common side effects include fatigue, nausea, vomiting, damage to the kidneys, numbness and tingling in the fingers or toes, decreased hearing, rash, a higher risk of infection from a low white blood count, or anemia. Patients may experience other side effects as well. Patients receiving this treatment are given the vitamins B12 and folic acid to lower the risk of these side effects. Other medications, such as those used to prevent vomiting, are also available to relieve many of these side effects.

  • Peritoneal mesothelioma. As mentioned in the surgery section (above), chemotherapy is often given directly into the abdomen after surgery. IV chemotherapy is also used. Just as with pleural mesothelioma, the combination of pemetrexed with cisplatin or carboplatin are most often used for treatment.

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.

Learn more about the basics of chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Getting care for symptoms and side effects

Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. People often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. You may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, surgery, or radiation therapy. Examples of palliative care for mesothelioma include draining fluid that has built up in the patient’s chest or abdomen or using radiation therapy or chemotherapy to relieve symptoms, such as pain. Talk with your doctor about the goals of each treatment in your treatment plan.

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care.

Metastatic mesothelioma

If cancer spreads to another part in the body from where it started, doctors call it metastatic cancer. If this happens, it is a good idea to talk with doctors who have experience in treating it. Doctors can have different opinions about the best standard treatment plan. Also, clinical trials might be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your treatment plan chosen.

Your treatment plan may include a combination of the treatments above, such as surgery, radiation therapy, and chemotherapy. Palliative care will also be important to help relieve symptoms and side effects.

For most patients, a diagnosis of metastatic cancer is very stressful and, at times, difficult to bear. Patients and their families are encouraged to talk about the way they are feeling with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, including through a support group.

Remission and the chance of recurrence

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. It’s important to talk with your doctor about the possibility of the cancer returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence

If the cancer does return after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your doctor will talk about your treatment options. Often the treatment plan will include the treatments described above such as surgery, chemotherapy, and radiation therapy, but they may be used in a different combination or given at a different pace. Your doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent cancer. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

People with recurrent cancer often experience emotions such as disbelief or fear. Patients are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment fails

Recovery from cancer is not always possible. If the cancer cannot be cured or controlled, the disease may be called advanced or terminal.

This diagnosis is stressful, and advanced cancer is difficult to discuss for many people. However, it is important to have open and honest conversations with your doctor and health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

Patients who have advanced cancer and who are expected to live less than 6 months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Learn more about advanced cancer care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss.

The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with cancer. Or, use the menu to choose another section to continue reading this guide.

Mesothelioma - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for patients with mesothelioma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Patients who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there is no guarantee that the new treatment will be safe, effective, or better than what doctors use now.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying ways to prevent cancer.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating mesothelioma. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with mesothelioma.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for mesothelioma, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for this type of cancer. Or, use the menu to choose another section to continue reading this guide.

Mesothelioma - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. To see other pages, use the menu.

Doctors are working to learn more about mesothelioma, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options best for you.

  • New treatment approaches. Researchers are evaluating new treatments for mesothelioma, including several promising new drugs, gene therapy, and immunotherapy. Immunotherapy is designed to boost the body's natural defenses to fight the cancer. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function.

  • Genetics of mesothelioma. Research is underway to find genetic changes that may cause mesothelioma. Other studies focus on finding specific blood markers that could help detect early-stage mesothelioma. Blood markers are substances found in higher than normal amounts in the blood of someone with cancer.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current mesothelioma treatments to improve patients’ comfort and quality of life.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding mesothelioma, explore these related items that take you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. Or, use the menu to choose another section to continue reading this guide.  

Mesothelioma - Coping with Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of cancer and its treatment. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu.

Every cancer treatment can cause side effects or changes to your body and how you feel. For many reasons, people don’t experience the same side effects even when given the same treatment for the same type of cancer. This can make it hard to predict how you will feel during treatment.

As you prepare to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of cancer treatment “palliative care.” It is an important part of your treatment plan, regardless of your age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for mesothelioma are described within the Treatment Options section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your general health.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a cancer diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in return.

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

Coping with financial effects

Cancer treatment can be expensive. It is often a big source of stress and anxiety for people with cancer and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost stops them from following or completing their cancer treatment plan. This can put their health at risk and may lead to higher costs in the future. Learn more about managing financial considerations, in a separate part of this website.

Caring for a loved one with cancer

Family members and friends often play an important role in taking care of a person with mesothelioma. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away.

Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:

  • Providing support and encouragement

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of cancer.

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care. It explains the importance of check-ups after cancer treatment is finished. Or, use the menu to choose another section to continue reading this guide.  

Mesothelioma - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will read about your medical care after cancer treatment is completed, and why this follow-up care is important. To see other pages, use the menu.

Care for people diagnosed with cancer doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will also ask specific questions about your health. Some people may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors including the type and stage of cancer originally diagnosed and the types of treatment given.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on the type of cancer, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment you received and develop a survivorship care plan once treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your cancer care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with him or her, as well as all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Or, use the menu to choose another section to continue reading this guide.  

Mesothelioma - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will read about how to with challenges in everyday life after a cancer diagnosis. To see other pages, use the menu.

What is survivorship?

The word “survivorship” means different things to different people. Common definitions include:

  • Having no signs of cancer after finishing treatment.

  • Living with, through, and beyond cancer. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long term, to either reduce the risk of recurrence or to manage chronic disease.

Survivorship is one of the most complicated parts of having cancer. This is because it is different for everyone.

Survivors may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain of how to cope with everyday life.

Survivors may feel some stress when frequent visits to the health care team end following treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and people miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexuality and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action you choose.

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the cancer diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving in this article.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make positive lifestyle changes.

People recovering from mesothelioma are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

In addition, it is important to have recommended medical check-ups and tests (see Follow-up Care) to take care of your health. Cancer rehabilitation may also be recommended, and this could mean any of a wide range of services such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes next after finishing treatment.

  • Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including for survivors in different age groups.

The next section offers Questions to Ask the Doctor to help start conversations with your cancer care team. Or, use the menu to choose another section to continue reading this guide.  

Mesothelioma - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu.

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

Questions to ask after getting a diagnosis

  • What type of mesothelioma do I have?

  • Where exactly is the tumor located?

  • Can you explain my pathology report (laboratory test results) to me?

  • What is the stage of the cancer? What does this mean?

  • What is my prognosis?

Questions to ask about choosing a treatment and managing side effects

  • What treatment options are available?

  • What clinical trials are available for me? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • How can I keep myself as healthy as possible during treatment?

  • In addition to treating my cancer, what can be done to treat my symptoms and side effects (such as pain medications or appetite stimulants)?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Could this treatment affect my sex life? If so, how and for how long?

  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before cancer treatment begins?

  • If I’m worried about managing the costs of cancer care, who can help me?  

  • What support services are available to me? To my family?

  • Who should I call for questions or problems?

Questions to ask about having surgery

  • What type of surgery will I have? Will lymph nodes be removed?

  • How long will the operation take?

  • How long will I be in the hospital?

  • Can you describe what my recovery from surgery will be like?

  • What are the possible long-term effects of having this surgery?

Questions to ask about having radiation therapy or chemotherapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • What are the possible long-term side effects of having this treatment?

  • What can be done to relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the cancer treatment I received?

  • What follow-up tests will I need, and how often will I need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • Who will be leading my follow-up care?

  • What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu to choose another section to continue reading this guide.  

Mesothelioma - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2016

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Mesothelioma. To go back and review other pages, use the menu.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of the Cancer.Net’s Guide to Mesothelioma. Use the menu to select another section to continue reading this guide.