When the Doctor Says the Word
You sit in the examination room. The doctor comes in with a folder. You can tell by the look on their face that the news is not good. They say a word you have never heard before. Mesothelioma.
Your heart sinks. Your mind races. You think about your family. You think about your future. You think about all the things you still wanted to do.
First, take a breath. You are not alone. Thousands of Americans have walked this path before you. Many of them have found treatment that works. Many of them have gotten financial help to pay for their care. Many of them have lived years longer than their doctors expected.
This guide is here to help you. You will learn what mesothelioma is, what causes it, what treatment options are available, how to find the best doctors, what to expect for your prognosis, and how to get the money you need to pay for everything. No complicated language. No overwhelming information. Just what you need to know, one step at a time.
What Exactly Is Mesothelioma?
Let us start with the simple explanation so you can understand what is happening inside your body.
Your body has a thin layer of tissue that covers your internal organs. This tissue is called the mesothelium. It protects your organs and helps them move smoothly. When you breathe, your lungs slide against your chest wall. When your stomach digests food, it moves against other organs. The mesothelium makes that possible.
Mesothelioma is cancer of that protective tissue.
There are four types of mesothelioma. The type you have depends on where the cancer started.
Pleural Mesothelioma
This is the most common type. About 75 to 80 percent of all mesothelioma cases are pleural. It starts in the tissue around your lungs. Symptoms include shortness of breath, chest pain, a persistent cough, and unexplained weight loss.
Peritoneal Mesothelioma
This is the second most common type. About 10 to 20 percent of cases are peritoneal. It starts in the tissue around your abdomen. Symptoms include belly pain, swelling in the abdomen, nausea, vomiting, and weight loss.
Pericardial Mesothelioma
This type is very rare. It starts in the tissue around your heart. Symptoms include chest pain, heart palpitations, and difficulty breathing.
Testicular Mesothelioma
This is the rarest type of all. It starts in the tissue around the testicles. The main symptom is a lump or swelling.
For the rest of this guide, we will focus on pleural and peritoneal mesothelioma since they are the most common.
What Causes Mesothelioma?
Almost every case of mesothelioma is caused by asbestos exposure. Asbestos is a mineral that was used in thousands of products for decades.
Why was asbestos so popular? Because it is strong, heat-resistant, and cheap. It was perfect for insulation, fireproofing, and strengthening materials. Asbestos was used in shipbuilding, construction, factories, power plants, automotive parts, and military equipment.
But there was a deadly secret. When asbestos is disturbed, tiny fibers float into the air. You cannot see them. You cannot smell them. You breathe them in without knowing. Those fibers get stuck in your lungs or stomach. Your body cannot break them down or get rid of them.
Over many years, sometimes twenty to fifty years, those fibers cause inflammation and scarring. Eventually, that inflammation can turn into cancer.
Who Was Exposed?
If you have mesothelioma, you almost certainly were exposed to asbestos at some point in your life. The most common exposures happened at work.
Shipyard workers: Asbestos was used heavily in shipbuilding. Pipes, boilers, engines, insulation, and gaskets all contained asbestos. Workers who built, repaired, or maintained ships breathed it in every day.
Construction workers: Asbestos was used in insulation, drywall, roofing, siding, flooring, ceiling tiles, and many other building materials. Anyone who cut, sanded, or demolished these materials was exposed.
Industrial workers: Factories, power plants, oil refineries, chemical plants, and steel mills all used asbestos for insulation and fireproofing.
Military veterans: All branches of the military used asbestos. The Navy used the most because ships were full of asbestos. But Army, Air Force, and Marine Corps veterans were also exposed.
Plumbers, electricians, mechanics, and insulators: These trades worked directly with asbestos-containing products every single day.
Family members: Here is something many people do not know. Family members were also exposed. Asbestos fibers stuck to work clothes. When workers came home, they brought those fibers with them. Wives who shook out work clothes inhaled asbestos. Children who hugged their fathers after work inhaled asbestos.
If you have mesothelioma, you did nothing wrong. You were just doing your job or living your life. The companies that made and sold asbestos products knew it was dangerous. They hid the truth. They are the ones at fault.
Recognizing the Symptoms
The symptoms of mesothelioma can be vague. They can look like many other, less serious conditions. That is why mesothelioma is often misdiagnosed at first.
Symptoms of Pleural Mesothelioma
- Shortness of breath that gets worse over time
- Pain in your chest or under your ribcage
- A dry cough that will not go away
- Difficulty swallowing
- Unexplained weight loss
- Extreme fatigue
- Lumps under the skin on your chest
Symptoms of Peritoneal Mesothelioma
- Pain or swelling in your abdomen
- Nausea and vomiting
- Loss of appetite
- Unexplained weight loss
- Diarrhea or constipation
- Anemia (low red blood cells)
- Lumps under the skin on your belly
If you have these symptoms and you know or suspect you were exposed to asbestos, tell your doctor immediately. Do not let them dismiss your concerns.
How Mesothelioma Is Diagnosed
Getting an accurate diagnosis is the first step toward getting the right treatment. Here is how doctors figure out if you have mesothelioma.
Imaging Scans
The first tests are usually imaging scans. A chest X-ray can show fluid around the lungs or thickening of the pleura. A CT scan gives a more detailed picture. It can show tumors and help doctors see if the cancer has spread to other parts of your body.
Blood Tests
There is no blood test that can definitively diagnose mesothelioma. However, there are blood tests that look for substances that are often elevated in people with mesothelioma. These tests can help doctors decide if a biopsy is needed.
Biopsy
A biopsy is the only way to know for sure if you have mesothelioma. A doctor takes a small sample of tissue from the suspicious area. A pathologist looks at it under a microscope. If cancer cells are present, the pathologist can tell what type of cancer it is and what type of mesothelioma cells you have.
There are three cell types. Epithelioid is the most common and responds best to treatment. Sarcomatoid is less common and more aggressive. Biphasic is a mix of both.
Mesothelioma Treatment Options
Mesothelioma treatment has improved significantly in recent years. Patients today have more options and better outcomes than ever before.
Surgery
Surgery aims to remove as much of the cancer as possible. For some patients, surgery can remove all visible cancer.
For pleural mesothelioma: There are two main surgeries. An extrapleural pneumonectomy removes the affected lung, the pleura, part of the diaphragm, and part of the lining of the heart. This is a major surgery with a long recovery. A pleurectomy with decortication removes the pleura but leaves the lung. Recovery is easier, and it is safer for many patients.
For peritoneal mesothelioma: Cytoreductive surgery removes all visible tumors from the abdomen. This is often followed by a treatment called HIPEC, which we will explain below.
Chemotherapy
Chemotherapy uses strong drugs to kill cancer cells. The drugs travel through your whole body, so they can reach cancer cells that have spread beyond the original tumor.
The standard chemotherapy for mesothelioma is a combination of two drugs called pemetrexed and cisplatin. Many patients receive this combination before surgery to shrink the tumor, or after surgery to kill any remaining cancer cells.
Chemotherapy is usually given in cycles. You receive treatment for a few days, then rest for a few weeks, then repeat. Most patients have four to six cycles.
Side effects can include fatigue, nausea, hair loss, mouth sores, and increased risk of infection. But there are good medications that help with most of these side effects.
Radiation Therapy
Radiation therapy uses high-energy rays to kill cancer cells. Unlike chemotherapy, radiation is targeted to a specific area.
Radiation is often used after surgery to kill any tiny pieces of cancer that might have been left behind. It can also be used to shrink tumors that are causing pain, difficulty breathing, or other symptoms.
Radiation treatments are quick and painless. You lie on a table while a machine moves around you. Each session takes about fifteen minutes.
Immunotherapy
Immunotherapy is a newer type of treatment that has shown great promise for mesothelioma. Instead of attacking the cancer directly, immunotherapy helps your own immune system recognize and attack the cancer cells.
The FDA has approved two immunotherapy drugs for mesothelioma. They are given together through a needle in your arm every few weeks.
Immunotherapy does not work for everyone. But for some patients, it has helped them live much longer with fewer side effects than chemotherapy.
HIPEC for Peritoneal Mesothelioma
HIPEC stands for Heated Intraperitoneal Chemotherapy. It is used specifically for peritoneal mesothelioma.
Here is how it works. A surgeon performs cytoreductive surgery to remove all visible tumors from your abdomen. Then, heated chemotherapy is pumped directly into your abdomen for about ninety minutes. The heat helps the chemotherapy penetrate the tissues more effectively. After the treatment, the chemotherapy is drained out, and the surgeon closes the incision.
HIPEC has been a game-changer for many patients with peritoneal mesothelioma.
Understanding Your Mesothelioma Prognosis
Your mesothelioma prognosis is your expected outcome. This is one of the first things patients want to know. How long do I have to live?
The honest answer is that statistics can tell you what happened to groups of people in the past. They cannot tell you what will happen to you.
Here are the factors that affect prognosis.
Cell type: Epithelioid mesothelioma has the best prognosis. Sarcomatoid has the worst. Biphasic is in between.
Stage: Early stage mesothelioma (stage 1 or 2) has a better prognosis than late stage (stage 3 or 4). This is why early diagnosis is so important.
Patient health: Younger, healthier patients who have no other serious medical conditions do better.
Treatment: Patients who are able to have surgery, chemotherapy, and radiation have better outcomes.
The average life expectancy for mesothelioma is about 12 to 21 months. But that is just an average. Many patients live much longer. Some patients live five, ten, or even twenty years. Do not let the statistics steal your hope.
Finding the Best Doctors
You need a doctor who specializes in mesothelioma. This is not a cancer that general oncologists see very often. You want someone who treats mesothelioma patients every day.
Some of the best mesothelioma treatment centers in the United States include:
- MD Anderson Cancer Center in Houston, Texas
- Brigham and Women’s Hospital in Boston, Massachusetts
- Memorial Sloan Kettering Cancer Center in New York
- Mayo Clinic in Rochester, Minnesota
- UCLA Medical Center in Los Angeles, California
Do not worry if you do not live near these centers. Many offer telehealth consultations. You can send your medical records to a specialist. They can review your case and recommend a treatment plan.
Your Legal Rights
Here is something every mesothelioma patient needs to know. You may be entitled to significant financial compensation.
Companies that made and sold asbestos products knew about the dangers for decades. They had internal documents showing that asbestos caused cancer. They hid those documents. They continued to sell asbestos products. They did not warn workers.
That is negligence. The law says they must pay.
Types of Compensation
Lawsuits: You can sue the companies that exposed you to asbestos. Most mesothelioma lawsuits settle out of court. The average mesothelioma settlement is between one million and two million dollars.
Asbestos bankruptcy trusts: Many asbestos companies went bankrupt because of lawsuits. When they went bankrupt, they were required to set aside money in trust funds for victims. There are over sixty of these trusts, holding more than thirty billion dollars.
VA benefits: If you are a veteran, you may be eligible for disability compensation and free health care from the VA.
Workers’ compensation: If you were exposed at work, you might be able to file a workers’ compensation claim.
Finding the Best Mesothelioma Lawyer
You need a lawyer who specializes in asbestos cases. Do not hire a general personal injury lawyer.
The best mesothelioma lawyer will:
- Offer a free consultation
- Work on contingency (you pay nothing upfront)
- Have handled hundreds of mesothelioma cases
- Have a track record of large settlements
- Be willing to travel to you
Do not worry about finding a lawyer in your city. Mesothelioma lawyers work with clients all over the country.
How Much Does a Lawyer Cost?
Nothing upfront. Mesothelioma lawyers work on contingency. They take a percentage of the money they win for you. If they do not win anything, you pay nothing.
You have nothing to lose and potentially millions to gain.
Clinical Trials
Clinical trials are research studies that test new treatments. They offer access to treatments that are not yet available to the general public.
For mesothelioma patients who have not responded to standard treatments, clinical trials can be a lifeline. New immunotherapy drugs, targeted therapies, and combination treatments are being tested all the time.
To find clinical trials, ask your doctor. You can also search online at clinicaltrials.gov.
Living with Mesothelioma
Treatment is hard. Here are some ways to take care of yourself.
Rest when you need to. Your body is working hard.
Eat as well as you can. Ask to speak with a nutritionist.
Stay as active as you can. Gentle exercise helps.
Ask for help. Friends and family want to help.
Talk about your feelings. It is normal to feel sad, angry, or scared.
Frequently Asked Questions
How long do I have to file a lawsuit?
Every state has a deadline. Call a lawyer as soon as possible.
What if I do not know where I was exposed?
Your lawyer can help figure it out.
What if my loved one already passed away?
You can file a wrongful death claim.
What is the average mesothelioma settlement?
Most cases settle for between one million and two million dollars.
Can I afford a lawyer?
Yes. Mesothelioma lawyers work on contingency. You pay nothing upfront.
Hope for the Future
Mesothelioma is a serious cancer. But the outlook is better today than it was ten years ago. New treatments are being developed. Immunotherapy is helping some patients live longer. Researchers are working on new drugs and new ways to detect mesothelioma earlier.
You have reason to hope.
But hope is not enough. You need action. Call a mesothelioma specialist today. Call a mesothelioma lawyer today. Get the treatment you need. Get the money you deserve.
You are not alone. There are doctors, lawyers, support groups, and other patients ready to help you. Reach out. Take the first step.
Disclaimer: This article provides general information about mesothelioma, treatment options, and legal rights. It does not constitute medical advice or legal advice. Every case is different. Always consult with qualified medical professionals and attorneys about your specific situation. If you or a loved one has been diagnosed with mesothelioma, speak with a doctor immediately and contact a qualified mesothelioma lawyer to understand your legal rights.