Diagnosing mesothelioma, especially in its early stages, is difficult because its symptoms are similar to many other kinds of illness. For example, one of the most common symptoms is shortness of breath, which also can be caused by such things as asthma and other lung ailments, and heart disease, as well as various forms of cancer.

This chapter covers the common symptoms associated with mesothelioma and other asbestos-related diseases, as well as various tests your doctor may order to make a diagnosis.

Mesothelioma Symptoms

Especially in early-stage mesothelioma, symptoms often are non- specific, meaning they can be caused by a number of things. Only a handful of mesothelioma patients have no symptoms at all. Most patients experience one or more of the following symptoms:

• Shortness of breath, with or without chest pain
• Pleural effusions (which may feel like pressure on the chest
  or abdomen)
• Chest or back pain, especially noticeable on one side
• Abdominal pain or swelling
• Unexplained weight loss, loss of appetite, fever or muscle weakness

Keeping track of your symptoms is key to helping your doctor diagnose your illness and evaluate your treatment (see Chapter 4).

Use the personal medical journal in the back of this book (Appendix B) to track your symptoms and their severity.

If you have any of these symptoms, talk with your doctor right away. Your survival chances improve with early detection and diagnosis. Make sure you tell your doctor about any known asbestos exposure and any occupational risk factors (see Chapter 2) so he or she knows to check for mesothelioma.
The following sections describe common mesothelioma symptoms in more detail.

Shortness of Breath

It’s normal to feel short of breath when you’re exercising or doing something strenuous, such as moving or carrying something heavy. But shortness of breath (called dyspnea) can indicate disease when you experience it during activities that normally wouldn’t cause any breathing symptoms, such as doing household chores, climbing stairs, or walking at a leisurely pace. Be sure to tell your doctor if you start getting short of breath during activities that you’ve been accustomed to doing without problems.

Shortness of breath is a subjective symptom, so your doctor will ask several questions to determine whether it’s cause for concern. He or she will ask you to describe how you feel physically when you get short of breath and whether you experience any pain in the chest or back. Other symptoms that often accompany shortness of breath—and that may indicate problems other than mesothelioma—include palpitations, wheezing, and coughing.

Pleural Effusion

Pleural effusion is another common symptom associated with asbestos exposure. Pleural effusion is a build-up of fluid in the pleura. Normally, the tiny blood vessels in the pleura produce lubricating fluid that allows the two sides of the pleura to glide smoothly against one another. Extra fluid is usually carried away by the blood vessels and lymph system.

When something goes wrong – either too much fluid is produced or excess fluid isn’t carried away – the pleura can’t move properly and you experience shortness of breath, often accompanied by pain or a heavy sensation in the chest.

As with shortness of breath, lots of health conditions can cause pleural effusion, including asbestos exposure and its related diseases. Pleural effusion is common with pleural plaque, asbestosis and malignant mesothelioma, but it doesn’t indicate asbestos-related diseases by itself; your doctor will have to perform several tests to diagnose the underlying cause of the effusion.

Chest or Back Pain

More than half of mesothelioma patients experience pain in one side of the chest or back. This pain usually is caused by pleural effusion, and it’s rare to have pleural effusion in both lungs.

Abdominal Pain or Swelling

When fluid builds up in the lining of the abdominal cavity
(the peritoneal pleura), you may experience swelling, pressure, or pain. This symptom is more common with peritoneal mesothelioma than with pleural mesothelioma, but it also can indicate either a spreading of the cancer or other health issues.

Unexplained Weight Loss

About a third of mesothelioma patients experience unexplained weight loss. This symptom is more common in patients with peritoneal mesothelioma (see Chapter 1) but occasionally occurs with pleural mesothelioma.  Unexplained weight loss also may be accompanied by abdominal pain, bowel obstruction (again, more common in peritoneal mesothelioma), nausea and loss of appetite, and anemia.

Other Symptoms

Mesothelioma patients sometimes experience other symptoms, although these other symptoms aren’t as common as those listed above. For example, a few (less than 1 percent) patients experience difficulty swallowing, chronic hoarseness, and coughing up blood.

Some patients also experience fever, muscle weakness, and numbness (or sensory loss). Swelling in the face or neck can indicate that the cancer has spread beyond the mesothelium.

Patients with peritoneal mesothelioma may have bowel obstructions, caused by a tumor pressing on the organs in the abdomen. Peritoneal mesothelioma also can cause increased frequency of urination, loss of muscle tissue, fever, and night sweats.

Diagnosing Mesothelioma

As with many other diseases, early detection of mesothelioma greatly improves your long-term survival chances and may give you more treatment options. However, because mesothelioma’s symptoms are similar to many other diseases, your doctor likely will conduct a number of tests to rule out other causes and confirm a mesothelioma diagnosis. During the initial evaluation of your symptoms, your doctor will talk to you about your asbestos exposure or risk and your own and your family’s medical history to decide which tests to order.

He or she will listen to your lungs and chest cavity and may conduct spirometry or lung function tests. Spirometry tests reveal how well you’re able to take in and expel air. You place your lips tightly around the mouthpiece and take as deep a breath as you can, then exhale as forcefully as you can for as long as you can. You may repeat this procedure three or more times to ensure a correct reading. Results depend on a number of factors, including age, sex, ethnicity and general health; your results will be compared with normal (or “expected”) results for your demographic group.

Based on your initial exam, your doctor will order one or more imaging tests to get a look inside your chest and/or abdominal cavity. Imaging tests are useful both for diagnosing your disease and for developing a treatment plan and tracking your body’s response to treatment, so you’ll likely undergo several imaging tests during your treatment.

Imaging Tests

X-rays are the most common and least expensive imaging tests, but they often don’t provide enough detail to diagnose mesothelioma. So your doctor may order one of the following:

• CT scan. CT (computed tomography) scans use x-rays and computers to draw more detailed pictures of your internal organs.
• MRI (magnetic resonance imaging) uses a magnetic field and radio waves to scan your body. MRI scans provide a much clearer picture of soft tissue than CT scans and sometimes are used to confirm a diagnosis based on a CT scan. MRI also is very useful for determining the stage of disease and planning surgical procedures.
• PET scan. PET (positron emission tomography) scans measure functional activity in your body. They’re used most often to determine whether cancer has spread far from its point of origin.
• PET-CT scan. This machine combines CT and PET technology and can provide your doctor with a better overall picture of your physical health.

The following sections describe these tests, what to expect, and how to prepare for them in more detail.

X-Ray

X-ray machines generate a tiny burst of radiation (generally recognized as safe) that passes through your body and records an image of your bones and internal organs on a special plate.
Chest x-rays are inexpensive and are often used as a preliminary imaging test when your doctor suspects mesothelioma or wants to rule out other lung diseases like emphysema or lung cancer. Many doctors’ offices have their own x-ray machines, or you may be referred to an imaging facility or hospital for the test. Chest x-rays generally don’t require anything in the way of preparation, and you won’t experience any pain or side effects. If you have trouble standing, you may be able to sit or lie down during the x-ray.

You undress from the waist up and put on an exam gown. You also need to remove any jewelry that may obscure the x- ray image, such as necklaces and earrings. You also may be asked to remove eyeglasses.

During the x-ray, a technician positions your body between the camera and the plate. For a front view, you stand against the plate, holding your arms up or at your sides and rolling your shoulders forward to allow for a better image of your lungs. You take a deep breath and hold it for a few seconds while the image is taken (inhaling or exhaling during the x- ray can blur the image). Holding an inhaled breath inflates your lungs and provides a better image.

The technician also may take side views, where you stand with one shoulder against the plate and raise your arms over your head. Again, you take a deep breath and hold it while the technician takes the image.

Your doctor and/or a radiologist examine the x-rays to see what’s going on in your lungs. Early-stage mesothelioma is difficult to detect on x-rays, and pleural thickening, which often occurs in later-stage lung disease, can hide the signs of mesothelioma. However, pleural effusions are often seen on x-rays and are a key indicator of mesothelioma.

CT Scan

CT machines take x-rays from several angles, and computer software manipulates the images to create cross-sectional views of your bones and soft tissues. Depending on the machine, the CT technician can even create three- dimensional images from the x-rays. Few clinics or doctors’ offices have their own CT machines, so you’ll go to an imaging center or hospital for this test.

CT machines look like long tubes with an opening in the middle. You lie on a narrow table that slides in and out of the machine, and the machine rotates around you to take x-rays at different angles. You have to lie still — with your arms either at your side or stretched out over your head — during the scan to prevent the images from being blurred. The technician may use pillows or straps to keep you in the proper position, and some people experience feelings of claustrophobia in a CT machine.

You’ll be asked to undress and put on an exam gown, and you’ll remove any jewelry so it doesn’t interfere with the imaging. For most CTs, you’ll be told not to eat anything for several hours before the scan. Depending on what your doctor is looking for, you may have to drink a preparation of contrast material – a special dye that provides sharper images by highlighting or outlining certain parts of your body. You also may have contrast material injected into a vein in your arm.

Some people have allergic reactions to the contrast material. Usually these reactions are minor, such as hives and a small itchy rash around the injection site. But, although rare, some people have severe reactions that can be life-threatening. Be sure to tell your doctor about any allergies you have and what reactions you had if you’ve been given contrast material before.

When the technician is ready to begin the scan, he or she will go into a separate room. You’ll communicate with each other through an intercom. You’ll hear some clicking and whirring noises while the machine takes the images. As we mentioned, some people feel claustrophobic in a CT machine and your position may not feel comfortable, but the scan itself is painless and relatively brief. As with chest x-rays, you may be asked to hold your breath for a few seconds to ensure that the images aren’t blurred.

After the CT scan, you’ll be able to return to your normal routine. If you were given contrast material, you may be asked to stay at the facility for a while to ensure you aren’t suffering any ill effects from the dye, and you may receive some special instructions for after you leave. Generally, if you’ve been given contrast material, you’ll be advised to drink lots of water to help your kidneys flush the dye out of your system.

A radiologist will look at the CT images on a computer screen and send a report to your doctor. Because of the improved detail of the CT, the radiologist can identify small tumors and abnormal build-up of fluids (effusions). CT images also can help your doctor pinpoint the best place to get a biopsy (covered later in this chapter), and can help show whether and how far any cancer has spread.

MRI

MRI machines look similar to CT machines, except they use a strong magnetic field and radio waves to create detailed images of your body. The magnetic field aligns the water molecules in your body, and the radio waves generate faint signals from those molecules to produce cross-sectional images of bones, organs, and soft tissue.

Because MRI uses a magnetic field, any metal in your body can affect both the image and your safety. Tell your doctor and the MRI technologist if you have:

• A pacemaker
• An implanted heart defibrillator
• Artificial heart valves
• Metallic joint replacements
• Cochlear (ear) implants
• Metal clips (used to prevent aneurysms from leaking)
• Shrapnel, bullet or any other kind of metal fragment in your body

Also tell your doctor and the MRI technologist about any kidney or liver problems you may have. Certain kidney and liver issues may require changes or limits on using injected contrast materials (see the CT section earlier in this chapter).

Unless your doctor tells you otherwise, you can eat and drink normally before your MRI. You’ll change into an exam gown and remove any jewelry, watches, hairpins, eyeglasses, wigs, dentures, and hearing aids. Women will have to remove their bras, especially those with underwires.

As with the CT scan, you’ll lie on a narrow table that moves in and out of the MRI machine and will communicate with the technologist via an intercom. The MRI scan is painless but noisy; the machine makes repetitive thumping, tapping, and other sounds. You may wear earplugs or listen to music on headphones to help block the noise. Some people feel claustrophobic in an MRI machine; if your claustrophia is severe, talk to your doctor about taking a sedative before the scan.

MRIs also require you to remain still while the images are taken, and you may be given contrast materials to enhance the appearance of certain tissues and organs.

If you haven’t been sedated, you can resume your normal routine immediately after the scan. If you’ve been given contrast materials, you should drink plenty of water to help flush those materials from your body.

A radiologist reads the MRI images and compares them to any chest x-rays or CT scans you’ve had, then sends a report to your doctor, who will share the results with you.

PET Scans

X-rays, CT scans, and MRIs look at your bones and internal organs as whole structures. PET scans look at the activity of the cells inside your body. They can be particularly useful in detecting mesothelioma and certain other types of cancer. For a PET scan, you’ll be injected with a radioactive glucose (sugar) solution, and you may experience a cold sensation moving up your arm from the injection site. (Sometimes patients inhale or swallow the solution, but injection into a vein is most common.) Cancer cells use more energy than normal cells, so they pull in the glucose at a higher rate than normal cells do. The radioactive component of the solution causes cancer cells to show up as bright spots on the scan images.

The glucose solution raises your blood sugar levels, so you’ll be given specific instructions on what you can eat and drink in the 24 hours before your scan. Generally, you won’t eat or drink anything (except water) for at least four to six hours before the scan. When you arrive at the imaging facility or hospital, you’ll receive the glucose injection, and then you’ll lie quietly for about an hour to give the solution time to circulate throughout your body. The scan itself lasts for between 15 and 30 minutes, and, as with other imaging tests, you’ll have to lie very still to ensure the images aren’t blurred.

Before your scan, you should talk with your doctor about all medications you take, including any over-the-counter drugs, vitamins, dietary supplements, and herbal preparations. You also should avoid strenuous physical activity in the 24 hours before your scan. It’s critical that you follow your doctor’s pre-scan instructions closely to avoid potential problems with the quality of the images and possible complications from the glucose solution.

Most PET scan facilities also recommend that you wear warm, comfortable clothing the day of your scan, because the scanner rooms often are kept at cooler-than-normal temperatures. You may be asked to change into an exam gown before the scan. You’ll also go to the bathroom to empty your bladder before your scan, and, if an area near your bladder needs to be examined, you may have a catheter to keep your bladder drained during the scan.

PET scan machines are similar in design to CT and MRI machines; see the descriptions in those sections earlier in this chapter. The PET machine makes buzzing and clicking sounds, similar to a CT machine but not as loud as an MRI.

After the scan, you should be able to resume your normal routine, but you’ll want to drink plenty of water afterwards to help flush the radioactive solution from your body.

A radiologist trained in reading PET scans will interpret the results and report them to your doctor, who will discuss them with you.

PET-CT Scans

Combination PET-CT scans provide the most clarity of any current imaging tests, by combining the CT’s view of the structure of your body’s bones, organs, and soft tissues with the PET’s detection of activity at the cellular level. Cellular changes can show up long before any structural changes – such as tumors – appear, making this particular test very useful in diagnosing certain diseases, locating the source of cancer and any places where it may have spread, and tracking how well treatment is working (see Chapter 4).

Taking Biopsies

Imaging tests can help your doctor pinpoint potential disease, but none of the imaging tests discussed in this chapter can definitively diagnose mesothelioma. To confirm the diagnosis, your doctor probably will order a biopsy, in which a sample of tissue or fluid is removed and examined.

Before a biopsy is taken and tested, your doctor likely will refer to a mass, lesion or other nonspecific term – instead of “tumor,” for example – as a subtle reminder that, until the biopsy is complete, neither you nor your doctor can know for sure what it is. Biopsies most frequently are used to determine whether an abnormal area of tissue or fluid is cancerous, but these tests also can be used to identify other conditions, such as infections and certain autoimmune diseases (such as lupus).

When the sample tissue or fluid is collected, it’s usually sent to a lab where a pathologist – a doctor who specializes in identifying and studying the nature, causes, and progression of disease – prepares the sample with special solutions and applies certain dyes, called immunostains, to make abnormal cells stand out under a microscope.

The pathologist examines these abnormal cells to determine whether you have cancer and, if so, what type. Preliminary biopsy results can take as little as a few minutes, but complete examination of the sample usually takes a week or two. Sometimes, the sample is sent to a second hospital or lab, where another pathologist reviews the results. The pathologist also will determine the cell type of any mesothelioma: epithelial, sarcomatoid, or biphasic (see Chapter 1).

For mesothelioma patients, there are two main types of biopsy procedure: noninvasive, often called needle biopsies, and surgical biopsies. The following sections offer more detail on these procedures.

Needle Biopsies

Needle biopsies are less invasive than surgical biopsies because they don’t involve incisions and usually don’t involve general anaesthesia. You’ll receive a local anaesthetic to numb the area where the needle is inserted, and your doctor may give you pain medications to take after the biopsy to minimize any discomfort. For most patients, post-biopsy pain and soreness last only a few days. Pain during the procedure typically is low, and most patients experience only a sense of increased pressure when the needle is inserted. The doctor may insert and withdraw the needle several times to ensure enough cells are collected.

Sometimes doctors order image-guided biopsies, using ultrasound or CT machines to pinpoint the proper site from which to take the sample.

Needle biopsies usually are performed in a hospital or outpatient surgical facility. In some cases, your doctor may ask you to avoid eating or drinking for several hours before the procedure; in other cases, fasting won’t be necessary. If you’re on blood thinners or certain other medications, your doctor may tell you to stop taking them a few days before and after the biopsy to reduce the risk of internal bleeding. Ask your doctor for specific instructions and follow them carefully to avoid complications.

After the sample is collected, your health care team will dress the insertion site with a bandage; you may be asked to hold it in place, applying some pressure for a few minutes to minimize bleeding. You may stay in a quiet room for a while until any anaesthesia or sedatives wear off, or you may be kept for several hours for observation to ensure there aren’t any complications.

If you’re sedated or under general anaesthesia for your biopsy, you won’t be able to drive or return to work after the procedure. You should make arrangements with family members or friends to drive you home, stay with you for 24 hours, and help with domestic chores for a day or two.

Mesothelioma patients typically have one of the following needle biopsy procedures:

• Pleural biopsy. A needle is used to take fluid and tissue samples from the chest and pleural membrane.
• This is usually ordered for patients who have excessive fluid built up in the chest cavity. Thoracentesis both collects samples for testing and drains excess fluid to help make the patient more comfortable.
• Paracentesis. Patients with peritoneal mesothelioma (see Chapter 1) often experience excess fluid build-up in the abdominal cavity. Paracentesis, like thoracentesis for pleural mesothelioma, is used to drain the excess fluid and collect samples for testing and diagnosis.

Cytology is when fluid only (not tissue) is collected. Fluid itself, however, may not provide a definitive diagnosis. If the fluid sample is negative, it means there are no cancer cells in the fluid – but it doesn’t mean there are no cancer cells in the tissues.

Surgical Biopsies

Surgical biopsies for mesothelioma involve cutting into the chest or abdomen to remove either a larger sample of tissue (called an incisional biopsy) or an entire suspicious mass (an excisional biopsy). Surgical biopsies usually are ordered when the target area can’t be reached by needle or when the samples collected from a needle biopsy don’t yield conclusive test results. Again, fluid may not provide a definitive diagnosis, so a tissue sample may be required.

You may have local or general anesthesia for a surgical biopsy, depending on where the target sample is located. You also may have to stay in the hospital for observation for a few hours, or even overnight, after a surgical biopsy.

The most common surgical biopsy procedures for mesothelioma are:

• Thoracoscopy/thoracotomy. A thoracoscope looks a bit like a long, thin telescope. It’s attached to a video camera and is inserted through a small incision in the chest. Thorascopy refers to using the scope to examine the pleura and other areas of the chest; thoracotomy means taking samples of the pleura or pericardial mesothelium to test for mesothelioma (see Chapter 1). A thorascopy is often referred to as VATS, for video assisted thoracic surgery (see Chapter 4).
• Laparoscopy/laparotomy. This procedure is similar to thoracoscopy, except that the incision is made in the abdomen and the scope is used to view and take samples of peritoneal tissue.
• Mediastinoscopy. To view lymph nodes and take samples, the scope is inserted under the sternum (breast bone) at the neck. This procedure is often used to help your doctor diagnose mesothelioma and determine how advanced it is. When a mesothelioma patient’s lymph nodes test positive for cancer, it means that the disease has progressed at least to Stage 3 (see Chapter 1).

Testing for and diagnosing mesothelioma can feel like a long process. But adequate testing is essential to confirm the disease and how advanced it is, and you and your doctor can’t come up with a sensible treatment plan until you know exactly what you’re dealing with. Turn to Chapter 4 to learn about various treatment options.