Mesothelioma Misdiagnosis and Finding a Specialist
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.
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."
Common Misdiagnoses
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 bod
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.
How Do Specialists Confirm a Mesothelioma Misdiagnosis?
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.
Does Stage Play a Role?
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.
An Accurate Diagnosis Leads to More Treatment Options
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.
How Can a Mesothelioma Misdiagnosis Affect You?
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.
How to Get in Touch with a Specialist
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.
Where to Find a Specialist
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.
Help with Financial Assistance
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.
author
Karen Selby