Mesothelioma Patients – What to Expect
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Getting a mesothelioma diagnosis is frightening and overwhelming, but knowing more about the disease can help. Find out what to expect from your diagnosis, how to find expert care, treatment options, and more to make the best decisions for the future.
What Is Mesothelioma and How Did This Happen?
Any cancer diagnosis is difficult to accept, but mesothelioma is rare, and many people don’t know anything about it. Some basic facts about this cancer can help you feel more informed as you go through with treatment and making other choices:
- Mesothelioma is a rare cancer that begins in the lining of organs in the body, known as the mesothelium.
- Pleural mesothelioma, cancer in the tissue around the lungs, is the most common type. The peritoneal type is the second most common and affects the lining in the abdominal cavity. Extremely rare is mesothelioma around the heart or testicles.
- Mesothelioma is aggressive and difficult to treat, but prognosis is different for every patient.
- The main risk factor for mesothelioma is asbestos exposure. If you worked with or around asbestos, exposure likely caused your diagnosis.
- The fibers of asbestos lodge inside the body, causing damage over time, but only some people exposed to asbestos develop mesothelioma.
How Will Mesothelioma Make Me Feel?
In the early stages, you may not feel bad at all. As cancer spreads and progresses, it causes more significant and severe symptoms. Typical mesothelioma symptoms include:
- Chest pains
- A painful, persistent cough
- Shortness of breath
- Lumps under the skin on the chest
- Weight loss
Peritoneal mesothelioma generally causes:
- Abdominal swelling and a feeling of discomfort
- Abdominal pain
- Nausea and gastrointestinal problems
- Weight loss
As mesothelioma progresses and becomes more widespread in the body, you may experience more difficult symptoms. You may experience difficulty swallowing, coughing up blood, a buildup of fluid around the lungs, extreme fatigue, a fever, and more severe weight loss. Mobility may become a challenge.
How Quickly Does Mesothelioma Progress?
Mesothelioma is initially slow to develop. It has a long latency period of several decades. This is the time between asbestos exposure and initial symptoms or diagnosis.
Once diagnosed, mesothelioma progresses rapidly compared to most cancers. It is aggressive and quickly spreads to nearby tissues and then more distant locations.
What Is My Prognosis?
Your oncologist or medical team of specialists can give you an estimated life expectancy or prognosis regarding how effective treatment will be. Unfortunately, the prognosis for mesothelioma is not good in most cases. Factors that affect this include your age and general health, the stage of the cancer, and the type of mesothelioma.
How Long Can I Live with Mesothelioma?
The five-year survival rate for pleural mesothelioma, an average based on many patients, is about 10%. This means that 10% of patients diagnosed survive five years or longer.
The earlier you can catch this cancer and the more aggressive treatments you can withstand, the better the prognosis.
Understanding your own life expectancy is important, but it is highly individualized. It is only an estimate and is based on your health, the type of mesothelioma, its stage, and the treatments you choose. Talk to your doctor about your personal prognosis and what you can do to improve it.
What Does Stage 4 Cancer Mean?
Unfortunately, a diagnosis of stage 4 is the worst case scenario. It means the cancer has spread from its initial location in the pleural or peritoneum and has invaded more distant tissues in the body.
The prognosis at this stage is not good. Life expectancy might be just a few months or potentially up to a year.
What Does the Mesothelioma Stage Mean?
When you get a diagnosis of mesothelioma, it comes with a stage designation. This describes the extent of the cancer and how much it has spread from the initial tumor site. Cancer is staged I through IV. The stage helps your doctor provide treatment guidance and estimate a life expectancy.
As with survival rate, life expectancies by stage are averages:
- Stage I. In this early stage, life expectancy is about 20 months.
- Stage II. By stage II, the cancer has spread into nearby tissues. The average life expectancy is still 20 months.
- Stage III. At stage II, the tumors have spread to nearby organs, such as lymph nodes, the lungs, or the diaphragm. Life expectancy at this stage is about 18 months.
- Stage IV. By the time the cancer has metastasized in stage IV, life expectancy is less than 15 months.
What Is the End Stage of Mesothelioma Like?
Many people receive a diagnosis of mesothelioma in stage III or IV, so it’s helpful to know what to expect in the later stages. Symptoms may be similar but likely to worsen. Toward the end of life, they may include:
- Extreme fatigue and a lot of sleeping
- Significant pain
- Decreased appetite and difficulty swallowing
- Weight loss
- Difficulty breathing
You can also expect to receive palliative care during this time. Surgical procedures, pain medications, therapy, and other treatments that make you more comfortable are included in palliation.
How Do I Get the Best Care for Mesothelioma?
The sooner you can get expert treatment for mesothelioma, the better the outcome will be. While mesothelioma is not often curable, it is possible depending on the type, stage, and treatment choice.
A regular doctor, or even an oncologist, cannot provide the best care for mesothelioma because of its rarity. Seek out treatment from a comprehensive cancer center with mesothelioma specialists on staff.
These specialists are experts in this rare cancer and have worked with mesothelioma patients, while other oncologists may never have encountered this diagnosis.
When you work with a specialist team, expect to see several professionals, get imaging scans done, go through biopsies, and be given treatment options and expert advice on which to choose. Specialists are also involved in research and may be able to connect you to a clinical trial for access to experimental treatments.
What Are My Treatment Options?
If you work with mesothelioma experts, they will outline all of your treatment options. Be prepared for the fact that your choices may be limited, though. When mesothelioma has progressed to a later stage, it may be unresectable. In other words, the tumors are too widespread to remove with surgery.
In earlier stages, surgery may be an option. You may be advised to undergo surgery to remove as much of the cancer as possible, followed by chemotherapy to eliminate as many of the remaining cells as possible.
Treatment for any type of cancer is uncomfortable, so expect to have additional side effects and take time to recover. Chemotherapy in particular causes a lot of discomfort:
- Hair loss
- Mouth sores
- Bleeding and bruising
- Loss of appetite
If you are concerned that your options for treatment are limited, talk to your medical team about experimental treatments, clinical trials, and emerging treatments that may help you.
Also, be aware that palliative care is also an option. This means receiving medications or undergoing procedures that don’t treat cancer but help to manage your symptoms.
Can I Hold Someone Accountable for Asbestos Exposure and Mesothelioma?
Most people are surprised to receive a diagnosis of mesothelioma. They don’t know how this happened and are disappointed to learn that their former workplace likely caused this cancer. Workplace exposure to asbestos is the leading cause of mesothelioma, and most people diagnosed were never warned about the risks of their jobs or given protective measures.
If you think your mesothelioma came from workplace asbestos, a mesothelioma lawyer can help you find and hold accountable those responsible. It may be a former employer but more likely will be a company that manufactured asbestos products used in your workplace.
When you work with a lawyer who specializes in these cases, you can expect advice and guidance in several ways:
- Your lawyer will do the research to determine where and how you were exposed to asbestos.
- They can use your medical records to prove that the exposure led directly to the mesothelioma diagnosis.
- Your legal team will need you to provide as much information as possible, including work or military service information and medical records.
- They will give you options for seeking justice, such as a lawsuit or asbestos trust, and give you advice on the best course of action.
- Your lawyer will provide the best option for getting compensated for your illness so that you can pay medical and other bills.
- A lawyer will help you every step of the way, with compassion and understanding of your illness. They are experts in asbestos and its consequences.
A mesothelioma diagnosis is difficult to take, but when you know what to expect, you can make better choices and feel good about them.Get Your FREE Mesothelioma Packet
Page Written by Mary Ellen Ellis
Mary Ellen Ellis has been the head writer for Mesothelioma.net since 2016. With hundreds of mesothelioma and asbestos articles to her credit, she is one of the most experienced writers on these topics. Her degrees and background in science and education help her explain complicated medical topics for a wider audience. Mary Ellen takes pride in providing her readers with the critical information they need following a diagnosis of an asbestos-related illness.
Page Medically Reviewed and Edited by Anne Courtney, AOCNP, DNP
Anne Courtney has a Doctor of Nursing Practice degree and is an Advanced Oncology Certified Nurse Practitioner. She has years of oncology experience working with patients with malignant mesothelioma, as well as other types of cancer. Dr. Courtney currently works at University of Texas LIVESTRONG Cancer Institutes.