What Is Peritoneal Mesothelioma?
If you or a family member has just been diagnosed with peritoneal mesothelioma, you may be feeling overwhelmed or scared about what’s to come. These feelings are natural, but know that you are not alone — and arming yourself with information can help you and your family navigate this disease.
Peritoneal mesothelioma develops in the lining of the abdomen, which doctors call the peritoneum. The peritoneum surrounds your stomach, intestines, and other organs.
What Causes Peritoneal Mesothelioma?
The only proven cause of peritoneal mesothelioma is asbestos exposure. Tiny asbestos fibers can drift into the air when old building materials, insulation, or car parts are disturbed. Once breathed in or swallowed, some of those fibers travel to the abdomen, settle on the peritoneum, and slowly irritate the tissue.
How Peritoneal Mesothelioma Develops
- Exposure: You breathe in or swallow asbestos fibers.
- Migration: Fibers move through the body and reach the abdominal lining.
- Irritation: Long-term inflammation damages healthy cells.
- Cancer: Damaged cells begin to grow out of control and form tumors.
If you’ve been diagnosed with peritoneal mesothelioma, your asbestos exposure may have happened decades ago, often without you realizing it. Many patients were exposed at work (in construction, the military, shipyards, or factories) or through secondhand contact from a family member’s clothing.
Download our Free Peritoneal Mesothelioma Guide to learn more about this cancer and the latest treatments that are helping patients live longer.
Peritoneal Mesothelioma Symptoms
Symptoms of peritoneal mesothelioma don’t appear until 10-50 years after exposure to asbestos. This is why many people are entirely caught off guard when they’re diagnosed with this cancer. Symptoms of peritoneal mesothelioma are also often confused with other gastrointestinal disorders, so patients and doctors often don’t realize the seriousness at first.
Common Early Signs
- Feeling full quickly or losing your appetite
- Mild belly discomfort, nausea, or heartburn
Symptoms That May Develop Later
- Constipation or bowel blockage
- Fever or night sweats
- Fluid buildup in the abdomen (ascites)
- Ongoing abdominal pain or swelling (bloating)
- Unexplained weight loss
If you feel like something is off, it’s important to see a doctor right away. Early treatment can make a significant difference in your quality of life and survival time. Get in touch with our team for help finding a doctor who can accurately diagnose you and prepare a personalized treatment plan.
“One of the most important things I tell patients is to find a doctor who really knows mesothelioma. Look for someone at a cancer center who sees a lot of cases every year. Experience makes a big difference.”
How Doctors Make a Peritoneal Mesothelioma Diagnosis
Diagnosing peritoneal mesothelioma can be tricky because it shares symptoms with common stomach problems. Because misdiagnosis is common, especially with a general doctor, it’s important to be your own advocate. If you think there’s more going on, push for more tests. Below are the steps that can help your doctor find out what’s going on.
- Your doctor will begin with a physical exam and a review of your medical history. They will also gently press on your abdomen to check for swelling, tenderness, or fluid buildup.
- Next, they may order imaging scans to look inside your body. A computed tomography (CT) scan is the most common type used for peritoneal mesothelioma. It can help doctors see tumors or other changes in your abdominal area.
- Blood tests may also be done to look for special proteins (called biomarkers) that sometimes increase when mesothelioma is present.
- The most important step is a biopsy, which is the only way to confirm malignant peritoneal mesothelioma. The doctor will use a general anesthetic before removing a small sample of tissue or fluid from the abdomen. This biopsy sample is then sent to a lab to see if it’s cancerous.
Although it can take time and multiple appointments, each step in this process will bring you closer to getting clarity.
Questions to Ask Your Doctor
Feeling unsure during medical visits is a very common experience. Asking the right questions can help you feel more in control and make sure you understand what’s happening.
Some of these could include:
- What tests are you running, and why?
- Could my symptoms be caused by something else?
- How experienced are you with peritoneal mesothelioma?
- What type of biopsy will I need?
- When will I get the test results?
- What happens next if the tests show cancer?
You can write these down or save them to your phone to bring with you. It’s also helpful to have a family member or friend there to listen, take notes, and speak up if you need support.
Why Misdiagnosis Is Common
The early symptoms of peritoneal mesothelioma often appear as more common illnesses. Many patients are first misdiagnosed with irritable bowel syndrome (IBS), Crohn’s disease, ovarian cancer, or even simple inflammation. In some cases, symptoms may be brushed off as age-related or stress-related digestive issues.
Because of these similarities, it’s not unusual to go weeks or even months without a clear diagnosis. This delay can be frustrating, exhausting, and emotionally draining, especially when symptoms don’t improve or start getting worse despite treatment.
If you’ve been dealing with symptoms and still don’t have clear answers — or if you just got a diagnosis and want to make sure it’s correct — consider getting a second opinion. A mesothelioma specialist can confirm your diagnosis, explain what it means, and help create a treatment plan that’s right for your situation.
Understanding Your Diagnosis
Once you’ve been diagnosed with peritoneal mesothelioma, your medical team will focus on two key details: how much the cancer has spread and what kind of cells make up the tumor. Both factors will directly shape your treatment plan and determine which options may work best for you.
Peritoneal Mesothelioma Stages
Staging helps doctors understand how far cancer has spread in the body. Peritoneal mesothelioma doesn’t have an official staging system, but many doctors use the peritoneal cancer index (PCI) to measure how widespread the disease is.
The PCI divides the abdominal area into 13 different sections. Each section gets a score from 0 to 3, based on how much cancer is found:
- 0 means no cancer in that section
- 1–3 means cancer is present (3 being most severe)
The scores are added up to get a total PCI score between 0 and 39. A lower score means the cancer is more contained, while a higher score means it has spread more widely.
| PCI Score | Stage | Meaning for Patients |
|---|---|---|
| 1–10 | I | Early; limited spread |
| 11–20 | II | Moderate disease |
| 21–30 | III | Advanced; widespread cancer |
| 31–39 | IV | Extensive cancer spread |
Oncologists (cancer doctors) use the PCI score to help decide on the best treatment options. For example, patients with lower scores may be good candidates for surgery, while those with higher scores might need chemotherapy or immunotherapy.
Peritoneal Mesothelioma Cancer Cell Types
When you’re diagnosed with peritoneal mesothelioma, your doctor will also identify the mesothelioma cell type. Knowing your cell type helps your medical team develop the most effective treatment plan.
- Epithelioid
- Sarcomatoid
- Biphasic
To figure out your cell type, your doctor will likely use a biopsy and lab tests. Sometimes, getting a second opinion from a mesothelioma specialist or having your samples reviewed at a specialized center can help confirm the diagnosis and make sure it’s accurate.
Peritoneal Mesothelioma Prognosis
One of the first questions people diagnosed with peritoneal mesothelioma ask is: “How long will I live with this?” That’s where the term prognosis comes in.
A prognosis is a doctor’s estimate of how an illness may progress. For peritoneal mesothelioma, this outlook is based on data from patients who’ve faced the disease before you. The average prognosis after surgery and heated chemotherapy (HIPEC) is about 53 months (just over 4 years).
These are two main ways doctors talk about prognosis, and while they can sound a bit technical, they’re really just tools to help you understand the bigger picture.
- Survival rate tells you how many people are still alive a certain amount of time after their diagnosis (like 1 year, 3 years, or 5 years).
- Life expectancy is the average amount of time people live after being diagnosed.
These numbers come from research studies and past patient data, but they don’t tell the whole story. They simply give doctors a general idea of how the disease can behave.
Factors Affecting Life Expectancy
- How early the cancer was found
- The treatments you receive
- Your age and overall health
- How your body responds to treatment
Everyone’s experience with mesothelioma is different, and no two cases are alike. Ask your doctor to explain your specific prognosis, what’s influencing it, and what steps you can take to improve it.
“Peritoneal mesothelioma is a serious disease, but if it’s caught early and treated aggressively, there can be positive outcomes.”
Treatment for Malignant Peritoneal Mesothelioma
Understanding your treatment options is one of the most important steps you can take after a mesothelioma diagnosis. The good news is that peritoneal mesothelioma often responds better to treatment than other forms of the disease, especially when caught early and treated by specialists.
Doctors may recommend surgery, chemotherapy, immunotherapy, or a combination of these treatments depending on your health, age, tumor location, and how advanced the cancer is.
Cytoreduction With HIPEC
The gold standard treatment for peritoneal mesothelioma is cytoreductive surgery with HIPEC (hyperthermic intraperitoneal chemotherapy). HIPEC is also referred to as heated chemotherapy.
The heat helps the chemotherapy work better by reaching cancer cells more deeply and causing less damage to the rest of the body. It also allows doctors to administer strong doses of chemotherapy directly to the abdomen with fewer side effects than standard IV chemotherapy.
The procedure has two parts:
- Doctors remove all visible tumors from the abdomen.
- They pump a heated chemotherapy solution into the abdomen. It circulates for about 90 minutes to kill any remaining cancer cells.
After surgery, most patients stay in the intensive care unit for monitoring and then move to a hospital room for a longer recovery period.
Chemotherapy
Systemic (whole-body) chemotherapy is the most common treatment for peritoneal mesothelioma patients who can’t get surgery. Unlike HIPEC, which is limited to the abdomen, systemic chemotherapy travels through the bloodstream to kill cancer cells. This approach helps slow cancer growth, shrink tumors, and relieve symptoms such as pain, bloating, and fatigue.
The standard chemotherapy drugs for peritoneal mesothelioma are:
- Alimta® (pemetrexed)
- Cisplatin (often combined with Alimta)
Your oncologist (cancer doctor) may adjust your treatment based on how well the cancer responds and how your body handles the side effects. Common side effects include fatigue, nausea, appetite loss, and lowered immune function. While these symptoms can be challenging, there are medications and supportive treatments that can help you feel better.
Be sure to talk with your care team about what to expect and how to prepare. Having a plan in place can make it easier to manage chemotherapy side effects and get the most out of your treatment.
Immunotherapy
Immunotherapy helps your own immune system recognize and fight mesothelioma. It’s been a big breakthrough for several types of cancer, and researchers are working hard to understand how well it works for peritoneal mesothelioma. While it’s not the main treatment right now, it may still be an option if other treatments haven’t worked or you qualify for a clinical trial.
Some of the most promising immunotherapy drugs include Opdivo® (nivolumab) and Yervoy® (ipilimumab). These medicines help the immune system spot cancer cells it might otherwise ignore. Another drug, Keytruda® (pembrolizumab), is approved for other types of mesothelioma and may sometimes be used off-label for peritoneal cases.
There are also real stories that offer hope. In one published case, a woman with advanced peritoneal mesothelioma went into full remission after receiving a year of chemotherapy and the immunotherapy drug Avastin® (bevacizumab).
Learn more about which peritoneal mesothelioma treatment options may be right for you in our Free Peritoneal Mesothelioma Guide.
Palliative Care to Manage Symptoms
Palliative care focuses on relieving symptoms and improving comfort at any stage of treatment. Many patients receive palliative care while still getting surgery, chemotherapy, or other treatments.
Common palliative treatments for peritoneal mesothelioma include:
- Anti-nausea medication
- Minor surgery to drain extra fluid from the abdomen
- Nutritional support
- Pain management
Don’t hesitate to ask your care team about palliative care early in your treatment. It can go a long way in making sure you’re as comfortable and supported as possible.
Clinical Trials and Emerging Therapies
If standard treatment options aren’t working or if you’re looking for cutting-edge alternatives, you may be able to join a clinical trial. Mesothelioma trials are carefully monitored research studies that test the safety and effectiveness of new drugs and treatments.
Some exciting areas of research for peritoneal mesothelioma include:
- Gene therapy
- Targeted therapy
- Vaccines
Peritoneal Mesothelioma Doctors
The best way to improve your prognosis is to see a peritoneal mesothelioma doctor for treatment. Many general oncologists may only see one or two cases of mesothelioma in their entire career.
In contrast, mesothelioma specialists have spent several years focused on this disease. They understand how peritoneal mesothelioma behaves, how it spreads, and how to treat it using the most effective therapies.
Some top peritoneal mesothelioma specialists include:
- Dr. Richard Alexander – Surgical Oncologist, RWJBarnabas Health
- Dr. Joel Baumgartner – Surgical Oncologist, Moores Cancer Center
- Dr. Shanel Bhagwandin – Surgical Oncologist, Jupiter Medical Center
- Dr. Hedy Lee Kindler – Medical Oncologist, University of Chicago Comprehensive Cancer Center
- Dr. Edward Levine – Surgical Oncologist, Wake Forest Baptist Comprehensive Cancer Center
- Dr. Mecker Möller – Surgical Oncologist, University of Chicago Comprehensive Cancer Center
- Dr. James Pingpank – Surgical Oncologist, University of Pittsburgh Medical Center
Peritoneal Mesothelioma Survivor Stories
Many people diagnosed with mesothelioma of the abdomen have outlived their prognosis and are still doing well several years later. Below are some of their stories.
- Alexis Kidd was diagnosed in 2007 following a gallbladder surgery, during which her doctor noticed something off and took a tissue sample from her diaphragm. Alexis underwent surgery and chemotherapy and is still living life with her husband over 18 years later.
- Jessica Blackford-Cleeton was diagnosed in 2015 after over a year of her symptoms being dismissed and ignored. Jessica had to advocate for an accurate diagnosis and fight to ensure her treatments wouldn’t affect her ability to have children. Today, Jessica and her husband have two sons and are navigating parenthood amid mesothelioma survivorship.
- Julie Gundlach was given 6-12 months to live after her diagnosis in 2006. Nearly 20 years later, Julie is a staunch opponent of the asbestos industry, using her voice to expose its dangers and ensure victims get justice. She takes life one day at a time, grateful for the big and small moments with her family.
Compensation for Peritoneal Mesothelioma Cancer
Many families navigating mesothelioma face high medical bills for surgery, chemotherapy, travel to specialized treatment centers, and everyday living expenses. Unfortunately, most people are not prepared for the full cost of cancer care, which can exceed $400,000 a year for mesothelioma.
The good news is that financial compensation is available. That’s because the companies that made or used asbestos knew it could cause cancer but failed to warn workers and the public. As a result, courts have held these companies legally and financially responsible for mesothelioma and other asbestos-related diseases.
You or a loved one may be eligible for compensation through:
- Asbestos trust funds
- Mesothelioma settlements
- Disability payouts for veterans exposed to asbestos
You don’t need to figure this out on your own. Legal support is available to help you file a claim quickly without adding more stress to your plate. Many mesothelioma law firms work on a contingency basis, meaning you don’t pay unless they secure compensation for you.
Get Help for Mesothelioma in the Abdomen Today
If you or your loved one has recently been diagnosed with peritoneal mesothelioma, there’s a lot to consider, and you may not know where to start. We’re here to walk this journey with you — from diagnosis through treatment and beyond.
We can help you:
- Understand your diagnosis and pathology report
- Find a specialist for treatment
- Navigate your options for financial assistance
- Connect with a support group or peer mentor
It’s always free to speak with us. Call (866) 608-8933 or fill out our contact form right now.
Malignant Peritoneal Mesothelioma FAQs
How do people get peritoneal mesothelioma?
Peritoneal mesothelioma is caused by exposure to asbestos. Asbestos is a harmful material that was once commonly used in construction, insulation, and industrial jobs. When asbestos fibers are breathed in or swallowed, they can travel through the body and get stuck in the lining of the abdomen, called the peritoneum. Over many years, these fibers can cause irritation and damage that may eventually lead to cancer.
Some patients may have heard of a gene called BAP1, which can increase the risk of developing certain cancers, including mesothelioma. However, BAP1 mutations do not cause mesothelioma on their own. Asbestos exposure is still the only known direct cause of peritoneal mesothelioma.
What is the survival rate for peritoneal mesothelioma?
The survival rate for peritoneal mesothelioma has improved in recent years, especially for patients who are able to have surgery combined with heated chemotherapy (HIPEC). About 50% of patients who get surgery are alive at least 5 years after diagnosis.
It’s important to remember that survival statistics are based on averages. Every person is different, and many factors can affect how long someone lives, including their age, overall health, and how early the cancer is found.
What is the life expectancy of someone with peritoneal mesothelioma?
Peritoneal mesothelioma life expectancy depends on the type of treatment a person receives and how far the cancer has spread. For patients who can have surgery with HIPEC, life expectancy can range from 5 to 10 years or longer. Some patients have survived for 25+ years with peritoneal mesothelioma.
For patients who cannot have surgery and are treated with chemotherapy alone, life expectancy is usually shorter, often around 1 to 2 years. However, supportive care, clinical trials, and new treatments can help some people live longer and more comfortably.
What are the final stages of peritoneal mesothelioma?
In the final stages of peritoneal mesothelioma, the cancer has usually spread throughout the abdomen and may affect nearby organs. Common symptoms include severe belly pain, nausea, bloating, weight loss, and fatigue. Some people may also have trouble eating or moving around because of fluid buildup or pressure from tumors.
During this time, doctors shift their focus to keeping the person as comfortable as possible. Palliative care can help manage pain, control symptoms, and support emotional and spiritual needs. Families may also receive help from hospice teams who specialize in end-of-life care.
Is peritoneal mesothelioma curable?
Right now, there is no cure for peritoneal mesothelioma, but some treatments can lead to long-term survival. The most successful treatment is surgery with HIPEC, which has helped some patients live many years without signs of cancer. While rare, some patients go into full remission, meaning the cancer is no longer detectable.
Even though it’s not considered curable, peritoneal mesothelioma is often more treatable than other types of mesothelioma, especially when caught early. New therapies and clinical trials continue to give patients more options and hope for longer, healthier lives.
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