Diagnosing mesothelioma is a challenge for doctors. Receiving an accurate and early diagnosis is vital to get the most effective treatment.
Written by Jenna Campagna, RN
FREE MESOTHELIOMA GUIDE
Mesothelioma packet includes:
- 200+ pages about your diagnosis.
- 3 books to improve your prognosis.
- Wristbands to show your support.
What Does a Mesothelioma Misdiagnosis Mean for You?
A mesothelioma misdiagnosis is an incorrect mesothelioma-related diagnosis given to a patient. This could involve a doctor diagnosing another cancer or condition to someone who has mesothelioma. It could also involve someone receiving a mesothelioma diagnosis when they actually have a different disease.
Mesothelioma is one of the rarest diseases known to medicine. According to the American Cancer Society, no more than 3,000 new cases occur in the United States each year.
Because of its scarcity, most general physicians and private-practice doctors don’t recognize mesothelioma, making misdiagnoses all too common. Additionally, detection methods are not 100% accurate.
Misdiagnosing mesothelioma is also common because this cancer shares similarities to other health conditions. For example, many of the mesothelioma symptoms are the same as those of influenza.
In order to avoid a misdiagnosis, you should:
- Receive your diagnosis from a mesothelioma specialist
- Undergo numerous tests, including a tissue biopsy
- Get a second opinion to ensure you receive a consistent diagnosis from multiple experts
FREE MESOTHELIOMA GUIDE
Mesothelioma Packet Includes:
- 200+ Pages about your diagnosis
- 3 Books to improve your prognosis
- Wristbands to show your support
Common Illnesses in a Misdiagnosis
Some of the most common illnesses in a mesothelioma misdiagnosis are pneumonia and irritable bowel syndrome. These misdiagnoses occur due to common symptoms and few conclusive testing methods.
Early detection of mesothelioma is still a long way from perfection, but there is a lot of research underway to make it more accurate. Currently, the most proven way to diagnose mesothelioma is through a mesothelioma biopsy. Doctors use tissue biopsies only after imaging tests reveal visual evidence of the cancer’s presence.
However, some doctors may not recognize mesothelioma on imaging scans. Instead, they will attribute the symptoms to less-severe, noncancerous conditions.
Most patients make their first visit to the doctor due to complaining of some common symptoms, such as:
- Difficulty breathing
- Chest or abdominal pains
In the case of mesothelioma, chest or abdominal pains are caused by fluid buildup (known as effusions) in the chest or abdomen. These effusions show up on imaging tests but may be mistaken for another condition.
Chest pains and shortness of breath are symptoms of pleural mesothelioma. However, they are also common symptoms of other respiratory ailments such as pneumonia.
Abdominal pains and indigestion are symptoms of peritoneal mesothelioma. This type of mesothelioma can be confused with irritable bowel syndrome.
Cancers Confused With Mesothelioma
In addition to being mistaken for common illnesses, mesothelioma is also confused with other cancers. This occurs primarily due to each main type of mesothelioma’s proximity to where other cancers form.
Pleural mesothelioma has been confused with several types of lung cancer — most notably, adenocarcinoma, which is a non-small-cell lung cancer. Pleural mesothelioma forms in the pleura, which is the protective membrane between your chest wall and lung cavity. The neighborly relationship between your pleura and lungs is why pleural mesothelioma is confused with lung cancer.
Peritoneal mesothelioma is often thought to be ovarian cancer. The peritoneum, which is where peritoneal mesothelioma forms, is a thin lining that wraps around your abdominal cavity. This lining is close to the ovaries, and around half of peritoneal mesothelioma cases involve women.
Trouble With Scans
Doctors often suspect more common cancers to be the cause of a tumor when they order X-rays and computed tomography scans. These scans are only useful up to the point of locating tumors, and biopsies are required to get an accurate diagnosis.
Difficulties in Pathology
Mesothelioma pathology involves examining biopsy samples and studying the cellular structure of the tissue or fluid sample to determine if it is mesothelioma. Pathologists can make mistakes when it comes to diagnosing these samples because some cancers have similar cellular structures to mesothelioma. Additionally, it’s possible the pathologist has never encountered mesothelioma before because it is such a rare disease.
Fluid Samples Are Unreliable
The biggest struggle in diagnosing mesothelioma involves fluid biopsies. Fluid buildup is a common symptom of mesothelioma, and collecting fluid samples from around the lungs or abdomen is a noninvasive diagnostic method. It’s easier to get fluid samples than tissue.
However, it is harder to examine cells under the microscope with fluid samples. Cells suspended in fluid provide a challenge for pathologists, and fluid samples don’t include as many cells as tissue samples do.
Fortunately, the evolution of tissue biopsies has helped in avoiding a mesothelioma misdiagnosis. Fine-needle aspirations and camera-assisted tissue biopsies have emerged as an alternative to large incisions. The most common camera-assisted needle biopsies are thoracoscopy (for pleural mesothelioma) and laparoscopy (for peritoneal mesothelioma).
Misdiagnosis of Mesothelioma by Stage
Though mesothelioma is often misdiagnosed as the wrong illness, it may also be misdiagnosed by stage. There are four mesothelioma stages. Some patients who are initially diagnosed with a later stage of mesothelioma may learn their disease isn’t as advanced as assumed. Other patients may learn their disease is more advanced than they were initially told.
One reason a misdiagnosis by stage can occur is simply because every patient is different. Doctors understand that there are general symptoms for each stage, but some patients may experience symptoms at different stages than is typical.
Doctors also may stage mesothelioma differently, and there isn’t an exact science to staging this cancer. The practice of staging mesothelioma often involves the doctor making an estimation based on the size of tumors and where they’ve spread.
Some doctors may base staging on symptoms, and there isn’t an exact science to which symptoms appear in each stage.
A study published in the Journal of Thoracic Oncology inspected staging among 1,056 mesothelioma patients. The researchers analyzed how often a misdiagnosis occurred for each stage of mesothelioma:
- 80.8% of stage 1 mesothelioma diagnoses were incorrect, and later “upstaged” to a more-advanced stage.
- 69.5% of stage 2 mesothelioma cases were misdiagnosed, and later changed.
- 35.4% of stage 3 mesothelioma diagnoses were inaccurate, and later changed.
- 12.8% of stage 4 mesothelioma cases were misdiagnosed, and later “downstaged” to a less-advanced stage.
Most changes involved upstaging the cancer to a more-advanced stage:
- Approximately 47% of patients were upstaged, while only 4.6% were downstaged.
- Of those who received a mesothelioma misdiagnosis, approximately 91% were upstaged and 9% downstaged.
If you’ve been diagnosed with malignant mesothelioma, it is imperative that you receive a second opinion from a specialist. Receiving a definitive diagnosis is the key to getting the most effective treatment.
Top Cancer Centers
Brigham and Women's Hospital
Memorial Sloan and Kettering Cancer Center
UCLA Medical Center
University of California Los Angeles Medical Center
New York, NY
Los Angeles, CA
How Does a Mesothelioma Misdiagnosis Affect Treatment Options?
Mesothelioma treatment is different from other types of cancer. If you receive an incorrect diagnosis, then you may be delayed receiving treatment or undergoing the proper surgery.
A misdiagnosis by stage is particularly important in the treatment options available for patients. Curative surgeries, for example, are determined to be acceptable on the basis of the patient’s stage. Earlier-stage patients are more likely to be candidates for surgery.
If you’re diagnosed with a more severe mesothelioma than you actually have, you might be denied curative therapies. If you experience a misdiagnosis that was more optimistic than the true diagnosis, then you may undergo an unnecessary surgery that risks additional complications.
Even if you received a misdiagnosis and your disease has progressed due to not receiving proper treatment, there is still hope for extending life. Research has shown that palliative (pain-relief) treatments can have a benefit on life expectancy in cancer patients.
There are also clinical trials offering innovative treatment approaches that may not be available to the general public. Clinical trials hold the potential to provide new hope to mesothelioma patients.
The Next Step for Mesothelioma Misdiagnosis Prevention
Although a mesothelioma diagnosis can be disheartening, it can be a blessing in disguise. Sometimes a misdiagnosis is more damaging to your prognosis than the actual diagnosis, which has been the case for some mesothelioma survivors.
Even that new diagnosis was slightly off. She received another opinion, this one from a specialist, who diagnosed her with stage 2 pleural mesothelioma. She was a candidate for aggressive treatment, which has helped her survive for around two decades.
Jodi knows the value of second opinions, stating that it made “a huge difference” in terms of available treatment options. She was originally misdiagnosed with advanced pleural mesothelioma, but a second opinion proved she was eligible for life-saving surgery.
Getting a proper diagnosis from a specialist is the primary way patients can limit the damage of a mesothelioma misdiagnosis. Find a specialist for your diagnosis with our free Doctor Match program.
Show Sources & Author
- Key Statistics About Malignant Mesothelioma. American Cancer Society. Retrieved from:
https://www.cancer.org/cancer/malignant-mesothelioma/about/key-statistics.html. Accessed: 06/12/2020.
- Initial Analysis of the International Association For the Study of Lung Cancer Mesothelioma Database. Journal of Thoracic Oncology. Retrieved from: https://www.jto.org/article/S1556-0864(15)33132-4/fulltext. Accessed: 06/12/2020.