A misdiagnosis by a doctor not experienced with mesothelioma can delay treatment and access to clinical trials, as well as impact the patient’s survival and well-being. This is why it is crucial to get a second opinion and confirm a diagnosis from someone who specializes in the disease.
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Malignant mesothelioma is such a rare and complex cancer that getting an accurate diagnosis often requires an experienced specialist who understands all of its intricacies.
Mesothelioma often is misdiagnosed by physicians and oncologists who rarely see it, and don't fully understand how it works, leading to unnecessary delays in developing a comprehensive treatment plan.
A misdiagnosis will reduce your chance of survival. Finding a specialist is critical. Second opinions are necessary.
If there is a history of exposure to asbestos – the primary cause of mesothelioma – then it is important to find a specialist who can diagnose or confirm the disease quickly, and tailor an effective treatment regimen to fit your personal needs.
"Mesothelioma is so complex, and its care so specialized, that a patient really needs the best care in the world," said mesothelioma specialist and thoracic surgeon Dr. Abraham Lebenthal of Brigham & Women's Hospital and the Boston VA. "This is not a knock on anyone, but many doctors only see one or two cases a year, and you don't want to be on someone's learning curve. Find the best. Find someone who sees this a lot."
Many of the early symptoms, like a persistent cough, shortness of breath, chest discomfort and night sweats, can mimic those of a less serious illness, and be dismissed initially. Mesothelioma can also be misdiagnosed as adenocarcinoma — a cancer that forms in the mucus-secreting glands in the body.
Patients with pleural mesothelioma, which starts in the lining around the lungs, often are told initially they have pneumonia or asthma, only to learn nine months later they had a much more serious illness brewing.
Patients with peritoneal mesothelioma, which starts in the lining around the abdominal cavity, have been told by physicians they have something as common as irritable bowel syndrome before learning their problem is much more serious.
The sooner that mesothelioma is diagnosed accurately, the better chance of survival because there more treatment options available. Second opinions are important.
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Factors That May Contribute to a Misdiagnosis
This asbestos-related cancer is complex. There are many intricacies involved and many of its symptoms mimic other, less severe respiratory conditions such as pneumonia, asthma, or conditions that affect the abdominal area, such as irritable bowel syndrome (IBS). This leads to misdiagnosing a patient with mesothelioma with a less serious disease.
When an oncologist isn’t familiar with this disease, it can be easy to misread the early symptoms, delaying the right diagnosis and the right treatment plan.
Even if a cancer diagnosis is made by a general oncologist, the types of mesothelioma cells vary. For example, pleural mesothelioma can be misdiagnosed as lung cancer, and peritoneal mesothelioma can be misdiagnosed as ovarian cancer.
It is also possible to misjudge the stages of the cancer. This is mainly because there isn’t a universal way for doctors to formally stage all types of this cancer. Pleural mesothelioma is the only type with a universal staging system, but even then, without a specialist, stages can easily be misinterpreted.
There is no clear path to a mesothelioma diagnosis because each case is unique and the early symptoms often mirror those of less serious illnesses. The diagnosis often starts with X-rays and other imaging tests like a CT scan. Fluid around the lungs is common is many diseases, and not just mesothelioma.
But if it recurs after being drained, and scans also show a thick rind or layer around the lungs, then more tests will be done for a possible mesothelioma diagnosis.
A specialist may order a thoracentesis, which uses a thin needle to remove fluid for analysis. Doctors are looking for certain types of cells and certain proteins to look for clues of a serious illness.
Next would be a thoracoscopy, which is a significant procedure that usually requires an overnight hospital stay. It also is known as VATS. A small camera can be inserted between the ribs and a biopsy from the lining around the lungs is removed. It is reviewed by a pathologist who specializes in these types of diseases. That doctor may ask for a second opinion on what they see.
If you have been diagnosed with mesothelioma, you may be eligible for compensation to cover your medical expenses.
Staging plays a role because it is a way to measure how far the cancer has progressed. It allows your doctor to provide a more accurate prognosis for the disease and tailor the treatment that will be used.
The earlier the stage of the cancer, the tougher it will be to diagnose, but finding it earlier gives you more treatment options and a better chance at long-term survival. It's another reason why seeing a specialist early in the process is so important. Catching mesothelioma in the early stage will give you a fighting chance.
If you have a history of occupational exposure to asbestos, make sure it's discussed with your doctor, and be attentive to those early symptoms. If they persist after a short period, take action.
Treatment options are based on a diagnosis. If a diagnosis is wrong, in most cases, so is the treatment. That is why it is important to seek a specialist who knows how to accurately diagnosis the type and stage of your cancer, which will lead to more precise treatment and may offer you more options.
Once your diagnosis is confirmed, a specialist will develop a tailored treatment plan. People with earlier stages of this type of cancer usually qualify for more aggressive treatment options with a higher chance of extending their life expectancy than those who were diagnosed in the later stages. Mesothelioma is categorized as stage I, II, III or IV.
Surgery to remove the tumor is considered the best treatment option for living longer with this disease, but it is typically only an option if the cancer was diagnosed in its earlier stages and if the cancer hasn’t spread too far. It is also commonly used as a multimodal approach in combination with chemotherapy and radiation.
If your doctor determines that you are not eligible for surgery, a combination of chemotherapy and radiation therapy may be chosen to relieve pain and improve life expectancy. The frequency, concentration and type of chemotherapy drugs may also depend on the stage and type of cancer that is diagnosed by your doctor.
Once the cancer progresses to its later stages, it may have spread and there may be less treatment options available. Other forms of treatment, such as alternative medicine and clinical trials are available if standard treatment options are limited, but these options also depend on the stage and type of your cancer.
If you are misdiagnosed, it will delay the start of the most appropriate treatment. However, the issue can be corrected by an experienced mesothelioma specialist who knows the intricacies of this very complex cancer.
A misdiagnosis is not uncommon. The rarity of it makes it unfamiliar to many physicians and oncologists. It is treated differently than lung cancer, but too often mistaken for it in the early stages.
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It may be easy to ask a family member or friend for a good referral when looking for a regular practitioner, but it you're looking for a mesothelioma specialist, the task is a little harder.
Only 3,000 patients annually are diagnosed with mesothelioma in the U.S., and there are only a limited number of specialists who really know the best ways to handle it.
We are here to help you find the right specialist for your needs. Our free Doctor Match Program can connect you with a doctor who is in the same part of the country in which you live and specializes in your type of cancer. Our network of specialists can provide you with an accurate diagnosis and offer you an effective treatment plan.
We know that traveling to see another doctor for a second opinion can be costly. We offer financial assistance to help with the costs. When you call, just let us know you're interested in receiving financial help to seek a second opinion with a top specialist.
You also will receive a free detailed packet of information to learn more about your diagnosis and why you should find a specialist. Each packet is customized for your individual needs. It includes books written by survivors and caregivers, informative pamphlets, doctor-reviewed information and awareness wristbands for you and your family.
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