State of Mesothelioma: 2023
Written by Sean Marchese, MS, RN | Edited By Walter Pacheco
Mesothelioma statistics can take years to research, time many patients don’t have. In this exclusive survey, The Mesothelioma Center at Asbestos.com asked more than 220 survivors, caregivers and their loved ones about the state of mesothelioma. About 40%-50% were eligible for surgery. More than 10% said treatment led to remission.
How Mesothelioma Patients Achieved Remission
Some mesothelioma patients achieve remission with an effective treatment plan and a healthy lifestyle. Remission often means significant tumor shrinkage or an extended period with no signs of cancer. Our unique 2023 survey found that doctors told 13% of mesothelioma patients they were in remission or cancer-free.
A quarter of patients who experienced remission had surgery. However, one effective treatment is only part of the picture. For many mesothelioma patients, remission occurs after finding the right combination of treatments.
Most Common Mesothelioma Treatments in 2023
According to the survey, every mesothelioma patient who experienced remission underwent some form of cancer treatment. The majority, 32%, had chemotherapy.
Only 5% of all patients, regardless of remission status, opted for no treatment.
Cancer type was an important factor in remission rate. Peritoneal mesothelioma patients were more likely to experience remission (21%) compared to pleural mesothelioma patients (10%).
Chemotherapy
Chemotherapy is the most common treatment for mesothelioma patients, comprising 32% of responses. Chemotherapy usage was the same for those who did and did not experience remission: 32% in both groups.
The most common medications included the chemo drugs pemetrexed (Alimta) at 30% and cisplatin at 29%. Most patients receive a platinum-based drug, either cisplatin or carboplatin, along with another type, usually Alimta.
Carla Fasolo, a pleural mesothelioma survivor from Leesburg, Florida, was diagnosed in 2021. She agrees that fatigue impacted her day-to-day activities.
“After having chemo, I became very, very tired, very lethargic. It was hard not being able to keep up with my daily chores,” she said.
For those who experienced remission and had chemotherapy, 36% received the chemo drug cisplatin. This number dropped to 4% for those who did not have remission.
In February 2023, the U.S. Food and Drug Administration reported a supply shortage of cisplatin and carboplatin. The shortage has continued for several months, affecting more than 90% of cancer centers and forcing some providers to use more expensive or unapproved options.
“This undoubtedly affects our patients,” thoracic surgeon Andrea Wolf told The Mesothelioma Center. “The concept that any of the critical therapies [for mesothelioma] can be vulnerable to shortage in manufacturing or availability is of concern.”
Immunotherapy
About a quarter of mesothelioma patients tried immunotherapy. Opdivo was the most common immunotherapy drug. Opdivo and Yervoy are the newest immunotherapy combination approved to treat mesothelioma. For the 82% of patients who did not experience remission, immunotherapy was 9% more common.
Immunotherapy is a more targeted treatment than chemotherapy. The drug tends only to affect areas where cancer is present. Side effects are often less severe and more reversible than those associated with chemo drugs.
The most common immunotherapy side effect was fatigue, experienced by 25% of patients. After tiredness, body aches and pain in muscles and joints were most frequent.
Surgery
According to the survey, 18% of mesothelioma patients had surgery. In the group who experienced remission, 25% underwent surgery. This number dropped by 9% among those who did not experience remission. Treatment options depend on patient eligibility. Invasive surgery may be too demanding for older patients or those with chronic illnesses.
Among patients who qualified for surgery, 1 in 4 opted not to have any surgery performed, despite the fact that surgery is closely correlated with mesothelioma remission.
Of those who underwent pleural mesothelioma surgery, 69% had a pleurectomy and decortication, or P/D, while 31% had an extrapleural pneumonectomy, also known as an EPP.
A pleurectomy and decortication procedure has become the prevalent surgery in recent years. It strips the pleural lining from the chest and removes tumor masses. Some patients with extensive cancer may require an EPP, which also removes the entire affected lung.
Seeking or Not Seeking a Mesothelioma Specialist
Nearly one-third of patients did not seek a mesothelioma specialist, and more than 10% were unsure if they ever saw one. Many patients may be unaware of the need to see a specialist for this rare cancer. Those who only see a general oncologist often don’t receive access to the latest and best treatments for mesothelioma.
When the specialist talked to us about [my wife’s] diagnosis, he was actually very positive. He was supportive. He said, “There are things we can do.” So at that point, I felt like there was hope. There were options.Anthony FasoloHusband of Carla Fasolo, Pleural Mesothelioma Survivor
Specialists include doctors from multiple specialties trained in mesothelioma, including oncologists, surgeons and radiologists. Seeking a specialist opens access to the latest and best treatments for mesothelioma, including novel therapies through clinical trials.
- 75% of mesothelioma patients who achieved remission saw a mesothelioma specialist.
- 31% did not see a specialist before treatment, and 11% were unsure if they did.
Getting a second opinion is essential for cancer patients. You should feel safe with your provider and trust that they offer the best options. That often means talking to two or more doctors at various cancer centers.
- 28% of patients only saw 1 doctor besides their primary care physician.
- 41% sought opinions from 2 doctors before starting their care.
- 27% spoke to 3 or more physicians before starting treatment.
A second opinion is vital because it lets you evaluate the pros and cons of working with specific cancer centers and their health care teams. If you’re unsure about the care you receive, it could jeopardize your health.
Peritoneal mesothelioma survivor Tamron Little told The Mesothelioma Center that seeing a specialist changed the way she approached treatment.
“My experience going to a specialist was like night and day compared to a general doctor,” Little said. “Once I found the peritoneal mesothelioma specialist, he gave me the hope I needed because he knew just what to do and what treatment was best for me.”
Participation in Mesothelioma Clinical Trials
A second opinion with a specialist is often the best way to gain access to mesothelioma clinical trials. Research trials offer the latest experimental therapies, but patient distance or treatment center availability can be limiting factors. Lack of awareness is another significant reason for low clinical trial participation.
Only 14% of mesothelioma patients participated in a clinical trial. Low participation highlights the need for patients to see a mesothelioma specialist. Those participating in a clinical trial may or may not receive the experimental drug. However, participants always receive the highest quality care that is standard for treating mesothelioma.
The oncologist didn’t think I’d last 30 days. I started Keytruda [in a clinical trial], and almost immediately things changed for the better. You could feel it. Something worked for me.Ron GreenPleural Mesothelioma Survivor
Talking to multiple physicians opens up more opportunities for care through clinical trials. You’ll have access to the newest treatments, such as proton radiation therapy, Tumor Treating Fields and the latest clinical trials.
Younger Patients More Likely to Seek Alternative Treatments
Mesothelioma patients under age 50 are 30% more likely to seek alternative therapy than those in the 71-80 age bracket. The Centers for Disease Control and Prevention reports that most people receive a mesothelioma diagnosis between ages 75 and 84. Treatments such as medical marijuana, therapeutic massage and acupuncture appear more popular with younger people.
Only 14% of patients over the age of 81 tried any form of alternative therapy. Complementary and alternative treatments were most popular in the under-50 age group, with 65% of patients trying some form.
About a quarter of mesothelioma patients used either medical marijuana or herbal medicine. Transcutaneous electrical nerve stimulation and energy therapy were the least common, with only 2% of patients trying either. While some patients may find relief with these options, they are not substitutes for traditional medicine.
What really got me through were the holistic things. I said, “I wonder if this is going to help me.” It wasn’t a cure-all, but it took the edge off. If anything, I just mentally felt better. It improved my well-being.Kim MadrilPleural Mesothelioma Survivor
It’s crucial to approach alternative medicine with a well-informed and cautious mindset. Some therapies may offer potential benefits, but consulting with a knowledgeable health care team is essential. Only they can ensure these options don’t interfere with your treatment plan.
Most Common Alternative Treatment: Marijuana
Medical marijuana was most popular in the 61-70 age group, with 20% of mesothelioma patients trying it. For those 81 and older, about 7% of patients used acupuncture (or acupressure) and 7% used CBD oil, the only two alternative treatments reported in this group.
Cannabis plants may have some anti-cancer benefits for mesothelioma patients. A 2022 research study published in the journal Cancers found that compounds derived from cannabis slowed the growth of human and rat mesothelioma cells in vitro. The researchers noted that survival rates in the rats did not increase, but further research could lead to more effective drug delivery methods in the future.
Despite High Mortality Rate, Only Half Seek Palliative Care
Palliative care focuses on relieving symptoms and improving quality of life. It’s often less invasive than treatment that aims to cure disease. Many doctors use it alongside standard therapy. Our survey found that only 51% of pleural mesothelioma patients and 45% of peritoneal patients received palliative care in any form.
Examples of palliative care include bedside procedures, radiotherapy, chemotherapy and immunotherapy. A pleurocentesis can remove fluid in the chest. Palliative radiation therapy can slow the growth of tumors pressing on the lungs. Patients can often start palliative care simultaneously with traditional treatments to help control symptoms.
Many people confuse palliative care with hospice services. While palliative care relieves symptoms, hospice provides end-of-life care for terminally ill patients. In our survey, 70% of people said they or their loved ones never received hospice care. Pleural mesothelioma patients were 17% more likely than peritoneal patients to use hospice.
When patients no longer respond to treatment, hospice can be a vital service. This type of care can make patients more comfortable through pain relief, dietary consults and end-of-life arrangements. Our Patient Advocates help patients, families and caregivers access the hospice resources they need for physical, emotional and spiritual support.
Key Takeaways
Examining the state of mesothelioma patients and treatment access in 2023 allows us to look forward and improve outcomes for the future. For patients who experienced remission, 25% underwent surgery, a significant increase of 7% compared to those who did not have remission. Cisplatin led to a 32% higher remission rate in the chemotherapy group.
Seeing a specialist leads to more treatment options and better outcomes, but roughly a third of mesothelioma patients did not see one. In 2024, encouraging more patients to see a specialist, receive palliative care and participate in clinical trials is the most likely path to improving mesothelioma prognosis and survival.
Our hope with this survey is to learn more about the experiences of mesothelioma patients and their loved ones. Access to medical care and treatment options change every year. By leveraging our expertise and sharing our insights, we can keep the facts and figures up to date for the entire mesothelioma community.
How the Survey Was Conducted
As the nation’s most trusted mesothelioma resource, half of the people diagnosed with mesothelioma in the United States come to The Mesothelioma Center for help. We have served those affected by asbestos exposure for nearly two decades and have a unique opportunity to contribute these new statistics for mesothelioma research.
- We surveyed 223 people with a confirmed mesothelioma diagnosis or a loved one with a confirmed mesothelioma diagnosis.
- We included 20-plus questions in the survey and ran it between April and May 2023.
- We sent survey questions exclusively to people who have previously connected with The Mesothelioma Center.
We plan to run this survey annually to continue aiding the mesothelioma community with the latest statistics. Building upon meaningful data year after year is how we can create a robust and long-lasting resource for mesothelioma patients, their families, providers and caregivers.
The statistics in this report apply only to people diagnosed with different types of mesothelioma. The statistics are not indicative of other conditions affecting the population at large.
