Facing a diagnosis of mesothelioma is difficult. At first most people feel lost and uncertain about their future. Although better treatments and continuing research has improved outcomes for many people, it remains a difficult cancer to treat.
To get the best outcomes it is important you:
Can we screen for mesothelioma?
Screening means testing healthy people to detect a disease in its early stages. People being screened usually have no signs or symptoms of that disease.
For cancer screening to be effective there must be an accurate test that can pick up signs of early stage cancer, when treatment is more likely to cure the cancer. It is important the test doesn’t give a positive result in people who do not have cancer (‘false positive’).
At present there is no reliable screening test for mesothelioma.
However, if you know you have been exposed to asbestos and may be at a higher risk of developing the disease, talk to your GP. They may suggest you have regular tests every few years to check for signs of the disease. If you are at a very high risk your GP may refer you to a chest specialist for regular check-ups.
People with mesothelioma sometimes have high levels of certain proteins in their blood but this is not a reliable method to diagnose mesothelioma. In the future we may be able to test for these substances to help with early detection of the disease.
However, for now they can only be used to help monitor the disease in someone who has already been diagnosed. See the ‘Research into mesothelioma’ section on page 39 for more about these tests
Doctors and other health professionals you may see
If you have cancer, one or more specialists will advise you about treatment options. You should expect to be cared for by a team of health professionals from the relevant major fields (see following list). Ideally, all your tests and treatment will be available at your hospital. This may not be possible in some non-metropolitan areas. Your GP will be kept informed about all your test results and treatment. They will be able to answer questions you may have in between appointments with your specialist doctors.
Health professionals who care for people with mesothelioma include:
You may only see a few of these people. However, it is important to know you do have several health professionals supporting you through your treatment. Talking to them about your concerns can help you manage your disease and treatment in the best possible way.
How mesothelioma is diagnosed
Most people begin by seeing their GP. Your GP will examine you and ask you about your general health, family history and current symptoms. Your doctor may be able to feel lumps in the area where you are having pain or discomfort. If you are short of breath your doctor will listen to your chest for signs of fluid build-up. They may notice other symptoms you were not aware of.
If your GP suspects you may have mesothelioma they will ask you to have a series of tests or may refer you straight to a specialist. Depending on your symptoms this may be a lung specialist (for pleural mesothelioma) or a gastroenterologist (for peritoneal mesothelioma).
Mesothelioma can be difficult to diagnose. Even if you have symptoms and certain tests indicate mesothelioma, doctors may still not be sure. Because of this you may need to have quite a few tests so your doctor can be sure.
of your diagnosis. This is important so they can recommend the right treatment.
Blood tests
You will have blood taken to check your overall general health. These tests will not show up mesothelioma but they can let your doctors know how your blood cells, liver, and certain chemicals are working. Cancer can affect how blood cells normally work so any changes to your blood can give your doctor important information.
X-ray
You will most likely have an x-ray of your chest or abdomen. The x-ray will look for any changes, like thickening of the pleura or fluid on the lungs or in the abdomen. These changes can be caused by other conditions. If they are present you will need to have further tests to find out what is causing the problems.
An x-ray is a simple test. You will be asked to stand in front of a machine with your chest or abdomen pressed to a plate and breathe in while pictures are taken. The radiation dose is low so it is not dangerous.
CT scan
A CT (computerised tomography) scan is a type of x-ray that takes pictures of the inside of the body. CT scans of the chest and the abdomen will show up swelling or fluid. The scan can detect the size and position of a mesothelioma. It can also help to show if the cancer has spread to the lymph nodes or to other organs.
This test takes about 30–40 minutes. To make the scan pictures clearer and easier to read you may have an injection of a dye into a vein in your arm. You may also be asked to drink a special liquid. It may make you feel hot all over for a few minutes.
You will be asked to lie on a table while the CT scanner, which is large and round like a doughnut, moves around you. Most people are able to go home as soon as their scan is over.
There is a small possibility of the injected dye causing an allergic reaction. Some people also have a strong metallic taste in their mouth. You should tell your doctor if you are allergic to iodine or contrast dyes, or if you are diabetic or have abnormal kidney function.
Pleural or peritoneal aspiration (fluid drainage/tap)
You may have a build-up of fluid either in your chest/lung area or abdomen. Fluid around the lungs is known as a pleural effusion. People with peritoneal mesothelioma may have fluid in the abdomen; this is called a peritoneal effusion or ‘ascites’.
The build-up of fluid happens because the cancer cells irritate the area. This extra fluid around the lungs or abdominal cavity can feel uncomfortable. If it is in your pleura you may begin to have breathing problems. Peritoneal fluid can cause swelling, tightness and pain.
Your doctor can remove the fluid from your chest or abdomen by using a local anaesthetic on the skin and putting a needle through the skin into the fluid. They will draw a sample of the fluid into a syringe. This can be sent to the laboratory to test for mesothelioma cells.
Removing the fluid can improve your symptoms. Sometimes further aspirations or taps are needed for comfort. Medications can be provided if you are experiencing pain or discomfort.
Biopsy
This allows the doctor to take a sample from any thickened tissue around the lungs (pleural area) or abdomen (peritoneal area). It is usually done as an outpatient procedure. You will have a local anaesthetic to numb the area of skin where the biopsy needle will go in. Depending on where your
mesothelioma is, your doctor will gently guide the needle either through your chest wall or into your abdomen and into the tumour, guided by xray, CT or ultrasound pictures, and remove some tissue.
Your doctor may want to take a closer look to get the sample of tissue. If this is the case then you will probably need to have a general anaesthetic and a small operation. A small incision will be made into an area of skin and a thin flexible tube with a light and camera attached at the end will be inserted. The tube is called an endoscope. When it is passed through the skin of the chest it is called a thoracoscopy. Passed through the abdomen it is known as a laparoscopy.
Samples of tissue will be sent to the laboratory for testing. This may be the only sure way of diagnosing mesothelioma and ruling out other diseases.
Further tests
You may have some other types of scans.
A bone scan can show whether cancer has spread to the bones. In this test, a small amount of radioactive substance will be injected into a vein. It travels through the bloodstream and collects in areas of abnormal bone growth. A scanner measures the radioactivity levels in these areas and records them on x-ray film.
Positron emission tomography, also known as a PET scan, involves injecting radioactive glucose solution into the body. Because cancer cells use more glucose than most normal cells, the PET scanner may detect increased quantities of the radioactive glucose in those areas of the body where the cancer is. It scans the whole body, including the bones, but not the brain. It appears to be the most accurate method for detecting cancer spread to areas other than the brain.
Other tests that can show if the cancer has spread or if surgery is a treatment option for you include mediastinoscopy, pericardioscopy, endoscopic ultrasound scan and laparoscopy. Some may require you have a general anaesthetic and stay overnight in hospital. If you need any of these tests your doctor will discuss them with you.
Waiting for test results
Waiting for test results is usually a worrying time. You and those close to you are likely to feel very anxious about what will happen if you do have mesothelioma. It is only natural to think the worst. However, try to take things day by day. Some results may come back quite quickly, within a day or two, but others can take up to a week or more. This can feel like a very long time.
Talk to your doctors and nurses about how you are feeling. Get as much information as you can from them about when and how you will get your results. Knowing how long they will take can make it less stressful than just continuing to believe they might be back tomorrow or the next day. Let those close to you know if you feel scared. They are probably feeling the same. Sharing your concerns can help a lot. You can try to support each other and reassure each other that feeling worried is normal during this time.
If you would like to talk to someone about how you are feeling call the Cancer Council Helpline on 13 11 20 and speak with one of the nurses.
Treatment
Many years of treating cancer patients and testing different treatments in clinical trials has helped doctors know what is likely to work for a particular type and stage of cancer. Your doctor will advise you of the best treatment for your cancer. This will depend on the type of cancer you have, where it is and how far it has spread, your general health, and what you want.
‘Staging’ the disease
The tests described on previous pages show whether you have cancer and some can also show whether it has spread. The cancer may have spread into surrounding tissue or to other parts of your body, including your lymph nodes. This is called metastasis or secondary cancer. Knowing if and how far the cancer has spread is called staging the disease. Staging helps your doctors to work out the best treatment plan for you.
‘Staging’ is a way of describing whether a cancer has spread, and if so, how far. Stage 1 means it has not spread; Stage 4 means it has spread to distant organs.
The staging system used for pleural mesothelioma is known as the ‘TNM system’ (T = tumour, N = lymph nodes, M = metastases).
Doctors combine this information to determine the stage of the cancer, from Stage 1 to Stage 4. For example, a pleural mesothelioma staged as T3, N1, M0 (tumour spread beyond the pleura into tissue around the pleural cavity, or to nearby organs, some lymph nodes affected, no metastasis) is a Stage 3 pleural mesothelioma.
There is no standard staging system for peritoneal mesothelioma. If your cancer is staged, doctors tend to use the TNM system described above.
Ask your doctor to explain the stage of your cancer in a way you can understand. This will help you to choose the best treatment for your situation.
It can sometimes be confusing to know which treatment is the best to have. Finding out as much as possible about the disease and its treatment helps most people feel more in control of their situation.
It allows people to make decisions about their treatment and care that are best for everyone. As with most types of cancer, the earlier someone is diagnosed, the better the outcome usually is.
Although there is no proven cure for mesothelioma, in the past few years there have been several major advances in treating the disease. These include:
Treatment for both types of mesothelioma may include a combination of:
Doctors can use palliative care treatments such as medications to help with pain relief and to relieve shortness of breath if you are too unwell for treatment
See the ‘Research into mesothelioma’ section on page 39 for more about these trials.
Other types of surgery you may hear about are:
Pleurectomy
Surgery can be used to completely remove mesothelioma that has not spread outside the pleura. This operation is known as pleurectomy. It involves removing part or all of the pleura and the lung tissue nearby. For many people with pleural mesothelioma this operation can help to control symptoms such as fluid build-up in the chest and relieve pain.
A pleurectomy is a major operation. However, some surgeons use keyhole surgery. If you have keyhole surgery you will have three small wounds, each about 2 cm long. You will need to stay in hospital for about seven days. Full recovery can take several weeks or more.
Extrapleural pneumonectomy
The surgeon may also suggest removing the pleura, diaphragm and the whole lung on the affected side, as well as the tumour. Lymph nodes may also be removed. This operation is known as extrapleural pneumonectomy. This type of surgery is usually done in combination with chemotherapy and radiotherapy to help improve outcomes.
The operation can be difficult to do and it will not help everyone. For a few people, however, it may be worthwhile. If the cancer is found when it’s still small, and you’re otherwise fit, surgery may help you gain more time and quality life.
The operation carries a risk of serious complications. Your doctor will talk to you in detail about these risks and together you can decide whether or not the risks outweigh the possible benefit for you.
If you decide to have this operation it is usually done by making a cut in the side of your chest (a thoracotomy). The wound will be quite long (about 22 cm). It is important to remember that you will be offered good pain relief methods during this time to cope with the effects of surgery.
You will need to stay in hospital for about two weeks. Full recovery from the operation can take some people several months.
Before and after your operation
Before you can have either of these operations you will need to have some tests to see if you are fit enough to cope with the surgery. Your doctor will explain in detail about each test. You may have already had some of the tests when you were being diagnosed. However, you may need to have them again. You may need:
Your medical team will talk to you about what will happen on the day of the operation as well as immediately after. This will include what tubes and drains you may have after the operation and how long you will be in hospital.
Surgery for peritoneal mesothelioma
Surgery is often not an option for people with mesothelioma in the abdomen (peritoneal). However if it is an option, the operation is known as a peritonectomy. This means removing the lining of the abdomen (peritoneum). It’s not often possible to remove all the cancer, but surgery may prolong life and can relieve symptoms such as bowel obstruction and pain.
There is a fairly new technique called cytoreductive or ‘debulking’ surgery. This is very intensive treatment and only possible in people who are fit and have early stage mesothelioma. It involves reducing the bulk of the cancer using surgery. During the surgery chemotherapy is given into the peritoneal cavity.
Although there has been some success with these treatments they are still considered experimental. For further information ask your doctor or call the Cancer Council Helpline on 13 11 20.
Going home after your operation
During your recovery at home it is important to gently exercise to help build up your strength. Your doctor or physiotherapist will advise you about the best type of exercise. Walking and swimming after the wounds have healed are usually good for most people after this type of operation.
It is likely you will have a community nurse visit you at home for a few weeks after you get home. You may have wounds to dress or need help with bathing. If you have any concerns after you get home, contact the hospital, lung cancer nurse if you have one, or your GP. Make sure you have these numbers before you leave the hospital and keep them handy at all times (by the phone or your bed).
Your doctor may recommend chemotherapy if other treatments aren’t suitable or the cancer has regrown following other treatment. In some cases it may reduce the size of the cancer, reduce its symptoms and improve quality of life. In addition, chemotherapy may help you to gain a few more months of life.
Chemotherapy for pleural mesothelioma is given as a drip into a vein in the arm or as an injection into a vein. You will have the drugs over a few days and then have a break for a few weeks (usually between two and four weeks). You will then begin your next cycle. The number of cycles you have will depend on the type of chemotherapy you have, the stage of your cancer and how well you cope with and respond to the drugs.
For people with peritoneal mesothelioma, chemotherapy is given directly into the abdomen area (peritoneal cavity). This is only suitable for people with early stage disease.
For information on particular chemotherapy drugs, call the Cancer Council Helpline on 13 11 20.
Chemotherapy used to treat mesothelioma may cause:
Your doctors and nurses will talk to you about the side effects you may expect to have.
To get the best outcomes it is important you:
- see the right specialist
- gain a definite diagnosis
- find out which treatment is best for your situation.
Screening means testing healthy people to detect a disease in its early stages. People being screened usually have no signs or symptoms of that disease.
For cancer screening to be effective there must be an accurate test that can pick up signs of early stage cancer, when treatment is more likely to cure the cancer. It is important the test doesn’t give a positive result in people who do not have cancer (‘false positive’).
At present there is no reliable screening test for mesothelioma.
However, if you know you have been exposed to asbestos and may be at a higher risk of developing the disease, talk to your GP. They may suggest you have regular tests every few years to check for signs of the disease. If you are at a very high risk your GP may refer you to a chest specialist for regular check-ups.
People with mesothelioma sometimes have high levels of certain proteins in their blood but this is not a reliable method to diagnose mesothelioma. In the future we may be able to test for these substances to help with early detection of the disease.
However, for now they can only be used to help monitor the disease in someone who has already been diagnosed. See the ‘Research into mesothelioma’ section on page 39 for more about these tests
Doctors and other health professionals you may see
If you have cancer, one or more specialists will advise you about treatment options. You should expect to be cared for by a team of health professionals from the relevant major fields (see following list). Ideally, all your tests and treatment will be available at your hospital. This may not be possible in some non-metropolitan areas. Your GP will be kept informed about all your test results and treatment. They will be able to answer questions you may have in between appointments with your specialist doctors.
Health professionals who care for people with mesothelioma include:
How mesothelioma is diagnosed
Most people begin by seeing their GP. Your GP will examine you and ask you about your general health, family history and current symptoms. Your doctor may be able to feel lumps in the area where you are having pain or discomfort. If you are short of breath your doctor will listen to your chest for signs of fluid build-up. They may notice other symptoms you were not aware of.
If your GP suspects you may have mesothelioma they will ask you to have a series of tests or may refer you straight to a specialist. Depending on your symptoms this may be a lung specialist (for pleural mesothelioma) or a gastroenterologist (for peritoneal mesothelioma).
Mesothelioma can be difficult to diagnose. Even if you have symptoms and certain tests indicate mesothelioma, doctors may still not be sure. Because of this you may need to have quite a few tests so your doctor can be sure.
of your diagnosis. This is important so they can recommend the right treatment.
Blood tests
You will have blood taken to check your overall general health. These tests will not show up mesothelioma but they can let your doctors know how your blood cells, liver, and certain chemicals are working. Cancer can affect how blood cells normally work so any changes to your blood can give your doctor important information.
X-ray
You will most likely have an x-ray of your chest or abdomen. The x-ray will look for any changes, like thickening of the pleura or fluid on the lungs or in the abdomen. These changes can be caused by other conditions. If they are present you will need to have further tests to find out what is causing the problems.
An x-ray is a simple test. You will be asked to stand in front of a machine with your chest or abdomen pressed to a plate and breathe in while pictures are taken. The radiation dose is low so it is not dangerous.
CT scan
A CT (computerised tomography) scan is a type of x-ray that takes pictures of the inside of the body. CT scans of the chest and the abdomen will show up swelling or fluid. The scan can detect the size and position of a mesothelioma. It can also help to show if the cancer has spread to the lymph nodes or to other organs.
This test takes about 30–40 minutes. To make the scan pictures clearer and easier to read you may have an injection of a dye into a vein in your arm. You may also be asked to drink a special liquid. It may make you feel hot all over for a few minutes.
You will be asked to lie on a table while the CT scanner, which is large and round like a doughnut, moves around you. Most people are able to go home as soon as their scan is over.
There is a small possibility of the injected dye causing an allergic reaction. Some people also have a strong metallic taste in their mouth. You should tell your doctor if you are allergic to iodine or contrast dyes, or if you are diabetic or have abnormal kidney function.
Pleural or peritoneal aspiration (fluid drainage/tap)
You may have a build-up of fluid either in your chest/lung area or abdomen. Fluid around the lungs is known as a pleural effusion. People with peritoneal mesothelioma may have fluid in the abdomen; this is called a peritoneal effusion or ‘ascites’.
The build-up of fluid happens because the cancer cells irritate the area. This extra fluid around the lungs or abdominal cavity can feel uncomfortable. If it is in your pleura you may begin to have breathing problems. Peritoneal fluid can cause swelling, tightness and pain.
Your doctor can remove the fluid from your chest or abdomen by using a local anaesthetic on the skin and putting a needle through the skin into the fluid. They will draw a sample of the fluid into a syringe. This can be sent to the laboratory to test for mesothelioma cells.
Removing the fluid can improve your symptoms. Sometimes further aspirations or taps are needed for comfort. Medications can be provided if you are experiencing pain or discomfort.
Biopsy
This allows the doctor to take a sample from any thickened tissue around the lungs (pleural area) or abdomen (peritoneal area). It is usually done as an outpatient procedure. You will have a local anaesthetic to numb the area of skin where the biopsy needle will go in. Depending on where your
mesothelioma is, your doctor will gently guide the needle either through your chest wall or into your abdomen and into the tumour, guided by xray, CT or ultrasound pictures, and remove some tissue.
Your doctor may want to take a closer look to get the sample of tissue. If this is the case then you will probably need to have a general anaesthetic and a small operation. A small incision will be made into an area of skin and a thin flexible tube with a light and camera attached at the end will be inserted. The tube is called an endoscope. When it is passed through the skin of the chest it is called a thoracoscopy. Passed through the abdomen it is known as a laparoscopy.
Samples of tissue will be sent to the laboratory for testing. This may be the only sure way of diagnosing mesothelioma and ruling out other diseases.
Further tests
You may have some other types of scans.
A bone scan can show whether cancer has spread to the bones. In this test, a small amount of radioactive substance will be injected into a vein. It travels through the bloodstream and collects in areas of abnormal bone growth. A scanner measures the radioactivity levels in these areas and records them on x-ray film.
Positron emission tomography, also known as a PET scan, involves injecting radioactive glucose solution into the body. Because cancer cells use more glucose than most normal cells, the PET scanner may detect increased quantities of the radioactive glucose in those areas of the body where the cancer is. It scans the whole body, including the bones, but not the brain. It appears to be the most accurate method for detecting cancer spread to areas other than the brain.
Other tests that can show if the cancer has spread or if surgery is a treatment option for you include mediastinoscopy, pericardioscopy, endoscopic ultrasound scan and laparoscopy. Some may require you have a general anaesthetic and stay overnight in hospital. If you need any of these tests your doctor will discuss them with you.
Waiting for test results
Waiting for test results is usually a worrying time. You and those close to you are likely to feel very anxious about what will happen if you do have mesothelioma. It is only natural to think the worst. However, try to take things day by day. Some results may come back quite quickly, within a day or two, but others can take up to a week or more. This can feel like a very long time.
Talk to your doctors and nurses about how you are feeling. Get as much information as you can from them about when and how you will get your results. Knowing how long they will take can make it less stressful than just continuing to believe they might be back tomorrow or the next day. Let those close to you know if you feel scared. They are probably feeling the same. Sharing your concerns can help a lot. You can try to support each other and reassure each other that feeling worried is normal during this time.
If you would like to talk to someone about how you are feeling call the Cancer Council Helpline on 13 11 20 and speak with one of the nurses.
Treatment
Many years of treating cancer patients and testing different treatments in clinical trials has helped doctors know what is likely to work for a particular type and stage of cancer. Your doctor will advise you of the best treatment for your cancer. This will depend on the type of cancer you have, where it is and how far it has spread, your general health, and what you want.
‘Staging’ the disease
The tests described on previous pages show whether you have cancer and some can also show whether it has spread. The cancer may have spread into surrounding tissue or to other parts of your body, including your lymph nodes. This is called metastasis or secondary cancer. Knowing if and how far the cancer has spread is called staging the disease. Staging helps your doctors to work out the best treatment plan for you.
‘Staging’ is a way of describing whether a cancer has spread, and if so, how far. Stage 1 means it has not spread; Stage 4 means it has spread to distant organs.
The staging system used for pleural mesothelioma is known as the ‘TNM system’ (T = tumour, N = lymph nodes, M = metastases).
There is no standard staging system for peritoneal mesothelioma. If your cancer is staged, doctors tend to use the TNM system described above.
Ask your doctor to explain the stage of your cancer in a way you can understand. This will help you to choose the best treatment for your situation.
It can sometimes be confusing to know which treatment is the best to have. Finding out as much as possible about the disease and its treatment helps most people feel more in control of their situation.
It allows people to make decisions about their treatment and care that are best for everyone. As with most types of cancer, the earlier someone is diagnosed, the better the outcome usually is.
Although there is no proven cure for mesothelioma, in the past few years there have been several major advances in treating the disease. These include:
- more accurate staging methods
- earlier diagnosis
- improvements in surgical techniques and post-surgery care
- using different chemotherapy combinations
- combining chemotherapy with newer treatments
- new radiotherapy techniques.
These advances have meant more people have received better symptom relief and possibly survived for longer. The aim of treatment is to make sure you have good quality of life for as long as possible.
All treatments have risks and you should talk these over with your doctor. Different specialists may have different opinions about the right treatment for you.
Treatment for both types of mesothelioma may include a combination of:
- surgery
- radiotherapy
- chemotherapy
- supportive care (palliative care).
Chemotherapy and radiotherapy can shrink the mesothelioma and also relieve symptoms such as pain. Research has shown chemotherapy can help prolong life in some people by weeks or months.
Doctors can use palliative care treatments such as medications to help with pain relief and to relieve shortness of breath if you are too unwell for treatment
Surgery for pleural mesothelioma
There are two operations for pleural mesothelioma:
- pleurectomy
- extrapleural pneumonectomy.
See the ‘Research into mesothelioma’ section on page 39 for more about these trials.
Other types of surgery you may hear about are:
- decortications of the lung – removal of the outer layer of the lung
- wedge excision – removal of a section of the lobe of a lung
- pleurodesis – controlling fluid build-up
Surgery can be used to completely remove mesothelioma that has not spread outside the pleura. This operation is known as pleurectomy. It involves removing part or all of the pleura and the lung tissue nearby. For many people with pleural mesothelioma this operation can help to control symptoms such as fluid build-up in the chest and relieve pain.
A pleurectomy is a major operation. However, some surgeons use keyhole surgery. If you have keyhole surgery you will have three small wounds, each about 2 cm long. You will need to stay in hospital for about seven days. Full recovery can take several weeks or more.
Extrapleural pneumonectomy
The surgeon may also suggest removing the pleura, diaphragm and the whole lung on the affected side, as well as the tumour. Lymph nodes may also be removed. This operation is known as extrapleural pneumonectomy. This type of surgery is usually done in combination with chemotherapy and radiotherapy to help improve outcomes.
The operation can be difficult to do and it will not help everyone. For a few people, however, it may be worthwhile. If the cancer is found when it’s still small, and you’re otherwise fit, surgery may help you gain more time and quality life.
The operation carries a risk of serious complications. Your doctor will talk to you in detail about these risks and together you can decide whether or not the risks outweigh the possible benefit for you.
If you decide to have this operation it is usually done by making a cut in the side of your chest (a thoracotomy). The wound will be quite long (about 22 cm). It is important to remember that you will be offered good pain relief methods during this time to cope with the effects of surgery.
You will need to stay in hospital for about two weeks. Full recovery from the operation can take some people several months.
Before and after your operation
Before you can have either of these operations you will need to have some tests to see if you are fit enough to cope with the surgery. Your doctor will explain in detail about each test. You may have already had some of the tests when you were being diagnosed. However, you may need to have them again. You may need:
- mediastinoscopy, which is a test to look into the centre of the chest where the heart is (mediastinum) – it can check to see if the mesothelioma has spread into this area. This test requires you to stay overnight in hospital because you need a general anaesthetic.
- pleuroscopy on the opposite lung to where the disease has been found, to see if it has spread to the other lung
- laparoscopy, to see if there is spread through the diaphragm to the peritoneal cavity
- pericardioscopy, which allows doctors to find out if the mesothelioma has spread into the layers covering the heart (pericardium). You will need a general anaesthetic for this test.
- PET or CT scans, to help find the size and extent of the mesothelioma lung function tests, to make sure your lungs are working well enough for you to have the operation
- echocardiogram, to find out how strong your heart is and how well it will cope if you have a lung taken out
- heart and lung exercise test, to find out how well these organs work during rest and exercise
- breathing and leg exercises
- blood tests such as full blood count, liver function and others.
Your medical team will talk to you about what will happen on the day of the operation as well as immediately after. This will include what tubes and drains you may have after the operation and how long you will be in hospital.
Surgery for peritoneal mesothelioma
Surgery is often not an option for people with mesothelioma in the abdomen (peritoneal). However if it is an option, the operation is known as a peritonectomy. This means removing the lining of the abdomen (peritoneum). It’s not often possible to remove all the cancer, but surgery may prolong life and can relieve symptoms such as bowel obstruction and pain.
There is a fairly new technique called cytoreductive or ‘debulking’ surgery. This is very intensive treatment and only possible in people who are fit and have early stage mesothelioma. It involves reducing the bulk of the cancer using surgery. During the surgery chemotherapy is given into the peritoneal cavity.
Although there has been some success with these treatments they are still considered experimental. For further information ask your doctor or call the Cancer Council Helpline on 13 11 20.
Going home after your operation
During your recovery at home it is important to gently exercise to help build up your strength. Your doctor or physiotherapist will advise you about the best type of exercise. Walking and swimming after the wounds have healed are usually good for most people after this type of operation.
It is likely you will have a community nurse visit you at home for a few weeks after you get home. You may have wounds to dress or need help with bathing. If you have any concerns after you get home, contact the hospital, lung cancer nurse if you have one, or your GP. Make sure you have these numbers before you leave the hospital and keep them handy at all times (by the phone or your bed).
Chemotherapy
This is the treatment of cancer by anti-cancer drugs. The aim is to destroy cancer cells while doing the least possible damage to normal cells. The drugs work by stopping cancer cells from growing and reproducing.
Your doctor may recommend chemotherapy if other treatments aren’t suitable or the cancer has regrown following other treatment. In some cases it may reduce the size of the cancer, reduce its symptoms and improve quality of life. In addition, chemotherapy may help you to gain a few more months of life.
Chemotherapy for pleural mesothelioma is given as a drip into a vein in the arm or as an injection into a vein. You will have the drugs over a few days and then have a break for a few weeks (usually between two and four weeks). You will then begin your next cycle. The number of cycles you have will depend on the type of chemotherapy you have, the stage of your cancer and how well you cope with and respond to the drugs.
For people with peritoneal mesothelioma, chemotherapy is given directly into the abdomen area (peritoneal cavity). This is only suitable for people with early stage disease.
For information on particular chemotherapy drugs, call the Cancer Council Helpline on 13 11 20.
Side effects of chemotherapy
All drugs can have side effects. Side effects depend on which drugs you have. Not everyone having chemotherapy will get side effects and it is rare to have every side effect.
Chemotherapy used to treat mesothelioma may cause:
- tiredness and feeling weak (fatigue)
- changes to your blood levels: increasing the risk of infection, bleeding and anaemia
- nausea and vomiting
- bowel problems (diarrhoea or constipation)
- mouth problems (sore, dry or ulcerated mouth)
- dietary problems (loss of appetite, taste changes, weight loss)
- muscle and nerve problems skin changes (rash, swelling, itchiness)
- changes in your ability to have children (fertility)
- hair loss and scalp problems (rare with the drugs used to treat mesothelioma)
- changes in your memory and ability to concentrate. This usually improves once treatment is over.
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