If you or a family member have received a mesothelioma diagnosis, the following page provides critical information about the disease. Mesothelioma is a rare form of cancer that forms in the thin tissues that encircle and protect our internal organs. This tissue is called the mesothelium.
Mesothelioma is caused by exposure to asbestos. When asbestos is sealed into materials such as ceiling tiles, shingles, flooring, and insulation, it is harmless. When it is disturbed, either in the manufacturing process or during maintenance or construction, tiny asbestos fibers float through the air. It’s easy to inhale asbestos without realizing it. If you worked around this mineral and weren’t provided the proper safety gear, you may have inhaled these microscopic mineral fibers.
Asbestos breaks into short, thin shards that have sharp ends. These fibers can lodge in tissues inside your body. Asbestos fibers most often end up in the lungs because that is the first stop after you breathe them in. The fibers can hide out in and around your lung tissue for many years, often decades, before you develop symptoms. The irritation they cause can lead to lung cancer or mesothelioma.
Mesothelioma diagnosis is complex because the symptoms of the disease overlap with symptoms of many other conditions. It can take multiple doctor visits over a period of weeks or months before your mesothelioma diagnosis is confirmed.
Before Your Mesothelioma Diagnosis
If you have worked in construction, on a ship or as a shipbuilder, or know that you were exposed to asbestos at some other point in your life, you should keep an eye out for the symptoms of mesothelioma. If you experience any of them, let your doctor know that you were exposed to asbestos. Otherwise, most physicians might not think to test for this uncommon cancer.
There are several kinds of mesothelioma, depending on where the tumor is. The most common is pleural mesothelioma, which affects the lining around the lungs and inside the ribs.
Symptoms of pleural mesothelioma can include:
- Persistent cough or coughing up blood
- Shortness of breath
- Chest pain
- Trouble swallowing
- Fever that doesn’t go away on its own
- Fluid around the lungs
Peritoneal mesothelioma affects the lining in the abdomen. Symptoms may include:
- Difficulty with elimination (bowel malfunction)
- Unexplained weight loss
- Pain in the groin
- Bloating or swelling in the abdomen
Pericardial mesothelioma attacks the lining around the heart. This rare type of mesothelioma can cause some of the same symptoms as pleural mesothelioma: chest pain, difficulty breathing, a cough that won’t go away.
Testicular mesothelioma is so uncommon that it is perhaps the most challenging mesothelioma diagnosis. Often misdiagnosed as a hernia or other illness at first, this form of mesothelioma causes a fluid buildup and swelling in the testicles. The only way to identify testicular mesothelioma is through lab testing after surgery. This is the only form of mesothelioma that hasn’t been clearly linked to asbestos exposure, though some men who develop this form have been exposed to the toxic mineral.
If you are experiencing any of these symptoms, go to your doctor and get checked out. Be sure and let your doctor know about your history of asbestos exposure. Most people who work around asbestos do not develop mesothelioma, but it’s important to be aware of the possibility. The earlier your mesothelioma diagnosis, the more treatment options you will have. While mesothelioma is still considered a usually fatal form of cancer, early mesothelioma diagnosis and treatment can add years to your life.
Mesothelioma Diagnosis Step One: Initial Exam
Because mesothelioma is an uncommon form of cancer, your primary care doctor may want to rule out other explanations for your symptoms before conducting the tests needed to make a mesothelioma diagnosis.
If you have fluid in your lungs, your doctor may start by taking x-rays and draining the fluid. You may get an initial diagnosis of pneumonia. Your doctor might prescribe a round of antibiotics to see if that makes you feel better, perhaps while waiting for the pathology report on the fluid.
A chest x-ray can reveal the signs of pleural mesothelioma: fluid buildup between the lung and the chest, unusual thickness of the pleura (the mesothelium around your lungs), calcium deposits, or lung abnormalities. However, any of these alone is not enough for a mesothelioma diagnosis. An x-ray that shows any of these signs is just an indicator for further testing.
Even if some indicators for mesothelioma show up on a chest x-ray, your doctor may not recognize them because this cancer is so rare. You are your own best advocate. Ask for more tests to determine for sure whether a mesothelioma diagnosis can be ruled in or out.
If your symptoms persist after the first treatment your physician prescribes, go back for a follow-up visit. At this point, given your history of asbestos exposure and your continuing symptoms, you probably want to ask your doctor to order additional tests. Your illness might not be mesothelioma and it might not even be caused by asbestos exposure, but it’s important to find out.
Mesothelioma Diagnosis Step Two: Testing
You will probably need to see more than one specialist and have multiple tests before your medical team gives a mesothelioma diagnosis. After your initial visit to your primary care doctor, you might be referred to a surgeon, a lung specialist, an oncologist, or other medical professionals.
A mesothelioma diagnosis takes multiple steps. Once a physician determines that a more serious condition might be the cause of your symptoms, he or she will order more testing. It can take several tests, considered together, to come to a mesothelioma diagnosis.
Types of Mesothelioma Tests
The tests to determine if a mesothelioma diagnosis is correct can include:
- Blood test
- CT scan
- PET scan
- X-ray (if this wasn’t done as part of the initial screening)
- Needle aspiration
The blood test is the easiest for you: all that’s required is to draw some blood and send it to the lab for analysis. Unfortunately, the blood tests for mesothelioma that are currently available are not accurate enough for a clear mesothelioma diagnosis. They miss some cases of mesothelioma and give false positives in other cases.
Blood testing is an area of growth in mesothelioma diagnosis. Researchers are working to develop new and more accurate blood tests and this may become a more useful diagnostic tool in the future. For the moment, though, a blood test for mesothelioma is just one indicator that may point your medical team toward which test to perform next.
CT scans and MRIs both take pictures of your body’s soft tissues. They can reveal cancerous tumors such as mesothelioma. Before either of these tests, you will probably receive an injection of a contrast material that helps the machines take clearer images. Before a CT scan, you might be given contrast to drink instead of an injection. These scans can indicate the presence of a tumor, but your doctors will probably need more testing before they can be sure if a tumor is mesothelioma, some other type of cancer, or something else altogether.
A PET scan uses a tiny amount of radiation, in a sugar liquid, to expose where cancer is in your body. Cancer cells are hungry for sugar and the fluid will migrate to cancer sites. PET scans can be especially helpful in determining whether mesothelioma has spread to the lymph nodes around the lungs or to other organs.
Each of these tests will take more of your time and energy than a regular x-ray. You might be in the MRI machine for up to an hour. You might want to meditate or listen to soothing music before the test starts, so you enter the process in a relaxed state. Plan to take it easy and rest afterward.
Some facilities have a machine that can do a PET and CT scan at the same time. A combination of these two tests has been especially helpful in confirming a mesothelioma diagnosis. Ask whether this combined test is available to you.
After your initial mesothelioma diagnosis, your doctors may repeat one or more of these scans to see how the disease is progressing. Testing can be useful at all stages of the disease to help determine the best mesothelioma treatment for you.
If a scan shows that you have a tumor, you will probably be sent for even more testing. Needle aspiration draws a sample of your fluid buildup to test for cancerous cells. This procedure is fairly quick and may be performed in the doctor’s office with just a local anesthetic.
Biopsy is a bit more invasive. This procedure collects a tissue sample for analysis. Biopsies are often taken while you are under general anesthetic. The incision for a biopsy may be very small, if your surgeon is able to reach your tumor by inserting a small tube. Your doctor will then insert a small cutting device through the tube to collect the sample. In some cases, your doctor may need to take a biopsy by making an incision near your tumor and collecting tissue by hand. In that case, the incision for the biopsy will be bigger.
A mesothelioma diagnosis almost always requires a lab test of a tissue sample. Sometimes a biopsy provides too small a sample. Your medical team may decide if it makes sense to remove the entire tumor for testing before settling on a mesothelioma diagnosis.
After any of these tests, there will be a waiting period before the results come in. A specialist will need time to read your scans and report back to your medical team. A laboratory can take from several days to a couple of weeks to test and analyze fluid and tissue samples.
Once your medical team has determined that you have cancer, they may not come up with a mesothelioma diagnosis right away. Even experienced oncologists (cancer specialist doctors) and pathologists can mistake mesothelioma for lung cancer at first.
Why is a mesothelioma diagnosis important? Isn’t treatment for one lung cancer the same as others? Actually, every cancer is different and requires different treatment.
Because mesothelioma is currently considered a usually terminal cancer, your doctors and surgeons may suggest more aggressive treatment for mesothelioma than they might for lung cancer. In addition, certain chemotherapy and immunotherapy treatments have been found to be particularly effective for mesothelioma.
This is why your history of asbestos exposure is so important. You want your treating physicians to keep digging until they have conclusively ruled mesothelioma in or out. A correct mesothelioma diagnosis will help determine the most effective treatment options. The sooner you have your mesothelioma diagnosis, the greater your chance to receive life-extending treatments. It is also critical to assessing your potential to obtaining compensation through the legal system.
Veterans and Mesothelioma Diagnosis
Veterans of the US Armed Services may be at special risk for mesothelioma. Service members who worked on ships, especially in boiler rooms, were probably exposed to asbestos. Many Vietnam veterans have developed mesothelioma because of asbestos used in vehicles and structures for that conflict.
Although mesothelioma usually appears several decades after asbestos exposure, it’s possible to trace veterans’ illnesses back to their military source. The VA recognizes that veterans may have a mesothelioma diagnosis as a result of their service.
Veterans are entitled to treatment for their illness at a VA center. In addition, the VA has special mesothelioma treatment centers in some locations. You can travel to receive treatment by these specialists at the VA.
The VA considers mesothelioma patients 100% disabled. You may be able to collect full or partial VA disability benefits if you contracted mesothelioma because of asbestos exposure in the military.
After Your Mesothelioma Diagnosis
Once your local medical team knows or suspects a mesothelioma diagnosis, it’s time to find a mesothelioma specialist. Mesothelioma specialists are oncologists and surgeons who focus on treating patients with various forms of mesothelioma.
Because mesothelioma is a relatively rare form of cancer, you may not find a mesothelioma specialist in the city or town where you live. If you are able, it’s worth traveling to see one of these specialists. We provide a list of doctors and clinics across the United States that specialize in the treatment of mesothelioma and other asbestos-related diseases here.
A mesothelioma specialist will have studied the latest research about the most effective treatments. That doctor may have even conducted some of that research or seen the benefits of new drug combinations on his or her own patients. When you have a mesothelioma diagnosis, a mesothelioma specialist is the best person to help you weigh the risks and benefits of different therapies.
A mesothelioma diagnosis may entitle you to certain benefits because of the seriousness of the disease and the fact that it is caused by negligent asbestos exposure. To receive these benefits, you will usually need to have your diagnosis confirmed by a mesothelioma specialist, who can then help your lawyer in the effort to get you those benefits.
In addition, a mesothelioma specialist may be able to connect you with clinical trials. When you participate in a clinical trial, you receive care from some of the most experienced doctors in the field. You can also get an early chance to try a new treatment that could work better than the existing treatment options. No matter what the outcome of the clinical trial, you will be doing a service to all the mesothelioma patients who come after you by moving the search for better treatments forward.
If you have a mesothelioma diagnosis, you don’t have to face it alone. At Mesothelioma Circle, we’ve created a caring community of support for mesothelioma patients and their families.