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Mesothelioma is difficult to diagnose. This problematic cancer has outward symptoms and microscopic signs similar to other types of cancer, as well as other less serious illnesses. Receiving an accurate diagnosis is important for all health problems. However, when the condition is aggressive and life-threatening like mesothelioma, a misdiagnosis can be deadly.
Mesothelioma can be misdiagnosed in several ways. Since accurate and early diagnosis is important for effective treatment, people exposed to asbestos, or who experience persistent symptoms of mesothelioma, are encouraged to seek a second opinion.
The Difficulty of Diagnosing Mesothelioma
Mesothelioma is notoriously difficult to diagnose. The time between initial exposure to asbestos and a confirmed diagnosis of mesothelioma is call the latency period. The average latency period for mesothelioma is several decades. Asbestos fibers lodged in the mesothelium cause damage over time, although symptoms may not present for 20 years or more. Trying to diagnose mesothelioma so long after exposure is challenging.
Confusing symptoms also make mesothelioma tough to diagnose. When a doctor sees someone with symptoms like chest pain, cough, and difficulty breathing, there are more common conditions the doctor may suspect. Even if the doctor suspects cancer, the signs of mesothelioma mimic those of lung cancer, which is more common.
More detailed diagnostic tests like CT, MRI, and PET scans cannot definitively diagnose mesothelioma. Images of mesothelioma tumors can look like lung cancer. Even a biopsy of the tumor cells is an imperfect tool because the cells of mesothelioma tumors look similar to other types of cancer cells. If the biopsy does not have enough mesothelioma cells, it can be very difficult for your medical team to give you a firm diagnosis.
Because mesothelioma is rare, difficult to diagnose, and has symptoms that mimic those of other conditions, it is often misdiagnosed. Symptoms like a persistent cough, shortness of breath, and chest pains for pleural mesothelioma can lead to a misdiagnosis. Likewise, abdominal pain, stomach upset, diarrhea, and cramping for peritoneal mesothelioma can have the same result.
Pleural mesothelioma is often misdiagnosed as an upper respiratory infection. It may be misdiagnosed as bronchitis, pneumonia, emphysema, asthma, chronic pulmonary obstructive disorder, or a type of lung cancer. Peritoneal mesothelioma may be misdiagnosed as irritable bowel syndrome, ulcerative colitis, a hernia, or even ovarian cancer. Although it is very rare, pericardial mesothelioma may also be misdiagnosed as heart disease or heart failure.
Misdiagnosis of Stage
Not only may the type of cancer be misdiagnosed, it is possible for a doctor to misdiagnose the stage of the mesothelioma. Staging is assigned based on the extent of the original tumor’s growth and how it has spread to other parts of the body. Mesothelioma is diagnosed as stage 1, 2, 3, or 4 based on certain criteria. Doctors use imaging scans, biopsies, and blood tests to make this staging diagnosis. However, many of these tests can be misleading and it is easy to miss part of the tumor that has spread.
The Importance of Diagnosis for Treatment
An accurate diagnosis for any health condition is crucial for getting the right treatment. With a disease like mesothelioma that can be fatal when treatment is delayed, a correct diagnosis becomes even more important. Although mesothelioma is difficult to treat, the earlier an accurate diagnosis is made, the better the prognosis.
An early and accurate diagnosis gives patients more treatment options. This is true for the diagnosis of the condition itself as well as the stage. A medical team needs accurate information to develop the best treatment plan. For example, if mesothelioma is misdiagnosed for several years, by the time a proper diagnosis is made, there may only be aggressive treatments available. If a diagnosis had been made sooner, that patient may have benefited from less invasive treatments.
Why Getting a Second Opinion is So Important
Because an early and accurate diagnosis leads to the best treatment options, getting a second opinion can be the difference between life and death. All patients should feel supported to get a second opinion, and encouraged in cases where the diagnosis might be unclear. A recent study looked at rates and outcomes of second opinions for various medical problems. In 15% of cases the diagnosis was changed and in treatment changed in 37% of the patients.
It may seem like you are insulting your doctor if you seek a second opinion, but that is not the case. Good physicians know the importance of having expert opinions. Every health care consumer has a right to getting as much information as possible. Since mesothelioma is a serious condition, a second opinion could make a huge difference in treatment options and life expectancy. For mesothelioma, at least one diagnosis should come from a doctor who specializes in this type of cancer.
What Mesothelioma Specialists Look for
Specialists who have studied this cancer are better able to distinguish between the symptoms of mesothelioma and those of lung cancer and other conditions. A specialist will use medical history, asbestos exposure history, physical exams, imaging scans, biopsies, histology, and genetic tests like the miRview to make a diagnosis.
Together, these diagnostic techniques provide the best picture of your condition. A specialist will be able to detect distinctive characteristics of mesothelioma a general doctor might miss.
Finding a Mesothelioma Specialist
If you suspect you have mesothelioma and are dissatisfied with your current diagnosis, seeing a mesothelioma specialist should be your next step. There are few mesothelioma specialists in comparison to other doctors. This is because the disease is so rare. Start with a recommendation from your doctor or oncologist. You can also look into cancer care centers. If you are a veteran, you can seek help from a VA medical center. A second opinion is important, so don’t neglect this crucial step.
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.