Written By: Devin Golden
Mesothelioma is one of the most difficult cancers to diagnose accurately. Since treatment decisions depend heavily on the correct diagnosis and staging, patients are strongly encouraged to seek a second opinion from a qualified mesothelioma specialist.
Medically reviewed for accuracy by
Dr. Stephen Williams
Precision Oncology Scientist
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Mesothelioma second opinions are critical because they can directly impact your treatment plan and overall outcome. Due to symptoms that can mimic common illnesses, mesothelioma is commonly misdiagnosed, which makes finding a mesothelioma expert essential.
The American Cancer Society identifies having a “rare or unusual cancer” as one of the most important reasons to seek a second opinion. Many doctors have little or no experience diagnosing mesothelioma, which is one of the rarest types of cancer.
Only 2,500–3,000 people in the U.S. are diagnosed with mesothelioma each year.
Receiving a mesothelioma diagnosis can feel overwhelming. Still, it should never prevent you or your loved one from seeking the highest level of care. An important part of the diagnostic journey is consulting with mesothelioma experts.
In most cases, the initial cancer diagnosis comes from a general oncologist. While highly trained and trustworthy most of the time, these doctors likely have little to no experience with mesothelioma. It is a very rare disease with one of the lowest incidence rates of all types of cancer.
As a result, doctors sometimes misdiagnose mesothelioma as another type of cancer or a condition with similar symptoms such as pneumonia. When this happens, effective mesothelioma treatments can be omitted or delayed.
Oncologists also can misidentify the stage of mesothelioma, believing tumors to be more or less advanced than in reality. When this occurs, patients are sometimes told they are not candidates for potentially life-saving treatments, such as surgery.
A second opinion from a mesothelioma specialist, however, may correct any mistakes from the original diagnosis. Physicians who have experience with this rare disease are often better-equipped to identify mesothelioma and the appropriate stage of the disease – or they may determine it is not mesothelioma at all.
Second opinions can provide patients with treatment opportunities that may have been initially overlooked. Discussing treatment plans with a mesothelioma specialist will help patients make more informed decisions and feel confident that every possible option has been explored.
Mesothelioma second opinions are vital to effectively fighting this cancer and living longer. They can open up the possibilities for life-saving surgeries, clinical trials, or other therapies. This can lead to an improved mesothelioma prognosis and longer survival.
Verifying the accurate stage of mesothelioma is a significant reason to get a second opinion. Staging is a pivotal part of determining an effective treatment plan. If your mesothelioma is in the late stages, you may receive a poor prognosis and have limited treatment options.
Many general oncologists misdiagnose the mesothelioma stage:
A study published in ScienceDirect reported that up to 62% of second opinions led to changes in diagnosis, treatment, or prognosis.
Another study published in the Journal of Thoracic Oncology reported around 13% of stage 3 and stage 4 mesothelioma cases were later “downstaged” to stages 1 or 2 after a second review by specialists.
For instance, your experience could be similar to Alexis K., who was originally diagnosed with stage 4 peritoneal mesothelioma. A second opinion revealed a less-advanced disease than originally thought, and she underwent life-saving surgery. She has survived for more than 13 years since her diagnosis in December of 2007.
Seeking a second opinion doesn’t just impact treatment; it also helps patients feel confident in the care they are receiving. Knowing that your diagnosis and treatment plan have been confirmed (or improved) by a mesothelioma specialist can reduce stress and provide true peace of mind.
Taking an active role in the decisions about your care, treatment, and prognosis is essential. Even after a second opinion, patients should not hesitate to continue seeking further medical input if they are unsatisfied with their options. The right care team can make all the difference.
“What a huge difference a second opinion was for me,” shared pleural mesothelioma survivor Jodi Page. “I went from an absolute death sentence to a possibility of life. I was told that I had stage 2 mesothelioma (not stage 3 or 4) and that surgery was still a possibility.”
Jodi Page
Pleural Mesothelioma Survivor
Her story underscores how a second opinion can transform fear into hope – and open the door to life-saving opportunities.
Here are a few options for how to connect with a mesothelioma specialist for a second opinion:
Talk to your primary care physician or oncologist.
They may provide a referral to a specialist.
Contact a specialist on your own.
Do your own research or contact a patient advocate, like our registered nurse Karen Ritter. The goal is to find a mesothelioma specialist who has experience treating this rare cancer.
Use our free Doctor Match program.
Our Doctor Match feature makes finding a specialist much easier and less stressful. We’ll help find a mesothelioma specialist that will review your medical records and can give you the answers you need.
Some patients hesitate to seek a second opinion, worrying it may seem disrespectful to their doctor. In reality, asking for another perspective is both common and essential – and no one should ever feel guilty about it. A second opinion could extend your survival and open doors to better treatment options.
“My strong advice to patients is to always ask for a second opinion.”
Dr. Michele Carbone
Mesothelioma Specialist at the University of Hawaii Cancer Center
Your health and your life are what matter most. Any trusted physician will understand the importance of seeking confirmation and may even recommend you to a mesothelioma specialist.
There may not be a mesothelioma specialist close to you; it may be necessary to travel to see them. Traveling should not prevent you from seeking the most experienced specialist or the most effective treatment options. In many cases, a mesothelioma specialist will agree to consult with a patient virtually or over the phone before any in-person appointments.
Seek a second opinion prior to making decisions about having any major surgery. Surgery for mesothelioma is often more aggressive and specialized than for other types of cancer. There are surgeries for both pleural and peritoneal mesothelioma, and it is crucial to find an experienced mesothelioma specialist to perform these procedures.
Due to the rarity of mesothelioma, physicians and cancer centers may differ on opinions related to the best methods for treating this disease. Determining eligibility for surgery demands a high level of specialized experience and careful clinical evaluation. Find a mesothelioma specialist who will create a customized treatment plan for your specific needs.
There are two main surgeries that may be used for the treatment of pleural mesothelioma – eligibility for surgery often depends on the mesothelioma type, stage, overall health status, and treatment goals.
The extrapleural pneumonectomy (EPP) is an aggressive surgery that involves removing the entire affected lung and all diseased tissue in the chest cavity. Careful patient selection is necessary to ensure a successful resection of the tumors and a smooth recovery.
Pleurectomy with decortication (P/D) is another aggressive surgery but leaves the affected lung intact, removing only the lining of the lung and any other diseased tissue. This option reduces complications and provides an easier recovery.
Doctors may differ on opinions about which surgery is best for patients but agree that a mesothelioma specialist is recommended to achieve the best results. Getting a mesothelioma second opinion can reveal more information about each surgery and help you make the best decision.
Neoadjuvant therapy refers to treatment that is given before surgery to help improve the surgical outcomes. This could include chemotherapy, immunotherapy, or radiation.
Mesothelioma specialists often recommend neoadjuvant treatments to stop the progression of the disease, shrink tumors, and improve the success of surgery. This can improve survival and quality of life.
An oncologist with little to no experience with mesothelioma may not know all the options when considering treatment for this rare cancer. Systemic therapies like chemotherapy and immunotherapy have been approved by the FDA for the treatment of mesothelioma.
While chemotherapy has been the mainstay of treatment for mesothelioma, specialists are finding that many patients have improved survival and often have fewer severe side effects with immunotherapy. The FDA has approved three immunotherapy options for mesothelioma: Keytruda, Opdivo, and Yervoy.
Mesothelioma specialists use their knowledge and experience to accurately evaluate patients prior to recommending surgery. The decision to perform surgery may be postponed or delayed until after the patient has had a positive response to a neoadjuvant therapy. Learn more about the benefits and challenges of surgery in our free Mesothelioma Guide book.
Receiving a second opinion from a mesothelioma specialist can help patients learn more about the treatment options available to them, compare treatment plans, and likely improve survival.
Mesothelioma second opinions provide peace of mind and comfort to patients with this cancer. Getting confirmation of your diagnosis from a specialist will allow you to move forward with the best treatment for your type of mesothelioma. A second opinion also may reveal new information on staging, cell type, and therapeutic options, which can impact your prognosis.
If you were diagnosed with mesothelioma, we encourage you to get a second opinion from one of the top-ranked cancer centers. These institutions likely have doctors who specialize in mesothelioma. They’ll provide an accurate diagnosis that either confirms your initial one or is more reliable.
Sources & Author
Receiving a second opinion for mesothelioma is an important step in understanding your diagnosis and exploring treatment options. Because mesothelioma is a rare and complex cancer, it can sometimes be misdiagnosed or staged inaccurately by general doctors who have limited experience with this disease. Consulting a specialist with extensive knowledge of mesothelioma can help confirm your initial diagnosis, ensuring it is correct and identifying the precise stage of the cancer. This can lead to better-informed decisions about your care and potentially more effective treatment strategies. A second opinion may also reveal additional therapies or clinical trials that could improve your prognosis and overall chances of survival.
Seeking a second opinion is especially vital because treatment plans are based on the cancer’s type and stage. Accurate staging is crucial for determining whether surgery, chemotherapy, immunotherapy, or other treatments are appropriate. Studies have shown that more than half of second opinions lead to changes in diagnosis or treatment plans, which can be pivotal for patients’ outcomes. For example, some patients discover their mesothelioma is less advanced than previously thought, allowing them to pursue surgeries or therapies they were told were not options. Many individuals, like Alexis K., have experienced extended survival after a second opinion corrected their staging, leading to life-saving treatments that might not have been considered otherwise.
While it’s natural to feel hesitant about seeking a second opinion, most trusted doctors understand and support this process. It can provide peace of mind by confirming your diagnosis and help you feel more confident in your treatment choices. Many patients find that consulting with a specialized mesothelioma expert, sometimes through virtual appointments, opens new doors for therapy options and supportive care. It’s essential to partner with experienced specialists, especially before making critical decisions about surgery or aggressive treatments, as these procedures require expert planning and execution. Ultimately, getting a second opinion is a way to ensure you are receiving the most accurate diagnosis and the best possible care tailored to your unique situation.
