Doctors who are unfamiliar with mesothelioma may give a patient a misdiagnosis, negatively impacting the patient’s survival and well-being. That’s why getting a second opinion from a specialist is crucial to properly identify and treat your condition.
Malignant mesothelioma is a rare and complex cancer. Most physicians and many oncologists rarely see it and don’t fully understand how it works. A specialist is required to get an accurate mesothelioma diagnosis and the right treatment plan.
If you have a history of asbestos exposure and new chest-related symptoms, find a mesothelioma specialist. It is important to find a specialist who can diagnose or confirm your condition quickly. These doctors can 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 and 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.”
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Asbestos-related cancer is complex. There is no clear path to a mesothelioma diagnosis. Each case is unique and early mesothelioma symptoms often mirror those of less serious illnesses.
When an oncologist isn’t familiar with this disease, it can be easy to misread the early symptoms. This can delay the right diagnosis and treatment plan.
Many of mesothelioma’s initial symptoms can mimic those of a less serious illness and be dismissed at first. These symptoms may include a persistent cough, shortness of breath, chest discomfort and night sweats.
Pleural mesothelioma starts in the lining around the lungs. These patients are often first told they have pneumonia or asthma. Later they learn they had a much more serious illness brewing all along.
Initial symptoms of pleural mesothelioma may be diagnosed as other conditions including:
Bronchitis or other bronchial infections
Chronic obstructive pulmonary disease (COPD)
Peritoneal mesothelioma starts in the lining around the abdominal cavity. These patients are often first told by physicians they have something as common as a hernia or irritable bowel syndrome. Eventually they learn they have a serious form of cancer.
Peritoneal mesothelioma survivor Kasie Coleman was misdiagnosed five times with various conditions before getting an accurate diagnosis.
“First it was bruised ribs. Second was chlamydia. Then it was irritable bowel syndrome, then gallstones and finally ovarian cancer,” Coleman said. “I can’t tell you the amount of people I’ve talked to that are no longer here because they just accept the first thing their doctor tells them.”
Even when a general oncologist makes a cancer diagnosis, their first suspect is often a more common form of cancer.
For example, pleural mesothelioma can be misdiagnosed as lung cancer. Peritoneal mesothelioma can be misdiagnosed as ovarian cancer or colon cancer.
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Mesothelioma can also be misdiagnosed as adenocarcinoma, a cancer that forms in the mucus-secreting glands in the body.
Peritoneal mesothelioma survivor Karen Frantz was first diagnosed with stage 3 ovarian cancer. A second surgery revealed her true diagnosis.
“Mesothelioma can be a frightening reality to be faced with. The chance of recovery may seem grim,” Frantz said. “But do not give up on life. When things look hopeless, you still can get through with a faith in God.”
Benign mesothelioma must also be ruled out with pathology tests. These tests look at biopsy samples under a microscope to tell one cancer apart from another.
Within mesothelioma itself, the types of mesothelioma cells vary. Patients may have epithelioid mesothelioma or sarcomatoid mesothelioma. Some patients have a mixture of the two. The cell type has a major impact on their prognosis and treatment options.
It is also possible to misdiagnose the stage of the cancer. Staging is a way to measure how far the cancer has progressed. It plays a central role in determining an accurate prognosis for the disease and what types of treatments are appropriate.
The earlier the stage of the cancer, the tougher it will be to diagnose. 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.
If you have a history of asbestos exposure, seek a second opinion from a mesothelioma specialist if you get symptoms in the chest or abdomen.
While it may seem unnecessary at the time, it is all too common for the initial symptoms of mesothelioma to be misdiagnosed as something less serious. Those with a history of asbestos exposure should always take any health changes seriously.
People diagnosed with mesothelioma should especially get a second opinion from an expert. The average oncologist won’t have the right experience to accurately diagnose and treat your cancer.
Many unspecialized oncologists will get the cancer right, but they misgauge the stage. Mesothelioma specialists know the right tests to get an accurate stage. This makes all the difference to getting the most effective treatment.
Getting a second opinion from a mesothelioma doctor also gets you access to pathologists who specialize in mesothelioma. Pathologists are the doctors who look at your biopsy samples in the lab. They’re the ones who ultimately confirm whether you have mesothelioma or some other cancer.
Mesothelioma doctors know which pathologists specialize in mesothelioma. They’ll only send your biopsy samples to the best pathologists to make sure your diagnosis is correct.
If you have mesothelioma, a second opinion is crucial to getting the right treatment.
It may be easy to ask a family member or friend for a good referral when looking for a family doctor, but finding a mesothelioma specialist is not so simple.
Only 2,000 to 3,000 patients are diagnosed with mesothelioma in the U.S. each year. There are few specialists and cancer centers with the resources and experience to give mesothelioma patients a fighting chance.
Peritoneal MesotheliomaNew York-Presbyterian Hospital/Columbia University Medical Center
Cardiovascular and Thoracic SurgeryUniversity of Alabama at Birmingham Comprehensive Cancer Center
General Surgery, Thoracic SurgerySidney Kimmel Cancer Center at Johns Hopkins Bayview
Thoracic malignanciesHollings Cancer Center at the University of South Carolina
Lung, Head and Neck CancersFroedtert Hospital and Medical College of Wisconsin
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Don’t take no for an answer. Pay attention to your body.
—Kasie Coleman, diagnosed with peritoneal mesothelioma in 2010
Potential history of asbestos exposure (reviewing a patient’s work history)
Pathology tests looking for specific mesothelioma cell types
Imaging tests such as X-rays and PET scans
Blood tests looking for mesothelioma biomarkers
Genetic tests looking for mutations associated with mesothelioma
The process of diagnosing mesothelioma often starts with X-rays and other imaging tests such as CT and MRI scans.
Fluid buildup around the lungs or in the abdomen can point to many diseases. But if it recurs after being drained, more tests should be done for a possible mesothelioma diagnosis.
A specialist may use a thin needle to remove fluid for analysis. This procedure is called a thoracentesis for pleural patients and a paracentesis for peritoneal mesothelioma patients. Doctors search the fluid for certain types of cells and proteins to look for clues to a serious illness.
The next step for pleural patients is often a thoracoscopy, also known as video-assisted thoracoscopic surgery (VATS). This procedure usually requires an overnight hospital stay. A doctor inserts a small camera and a special probe through small incisions in the chest to remove a biopsy sample of tumor tissue.
There are several other types of biopsy procedures doctors may use depending on the location of the tumor tissue. After the biopsy sample is taken, a pathologist reviews it under a microscope to identify the cancer and its cell type.
Treatment options are based on the diagnosis. In most cases, if a diagnosis is wrong, so is the treatment.
If you have a history of asbestos exposure, make sure you discuss it with your doctor. Be attentive to warning signs that may be early mesothelioma symptoms. If they persist after a short period, take action.
The sooner your diagnosis is confirmed, the sooner a specialist can develop a treatment plan. Patients diagnosed in an early stage usually qualify for more aggressive treatment options. Aggressive treatment has a higher chance of extending life expectancy.
An accurate diagnosis changed everything about peritoneal mesothelioma survivor Darlene Micciche’s treatment and prognosis.
She was originally misdiagnosed with pancreatic cancer. Seeking a second opinion changed her diagnosis to peritoneal mesothelioma. She got the right surgery and chemotherapy for her true cancer and now enjoys spending time with family and friends.
“For two weeks, I thought I had stage 4 pancreatic cancer,” Micciche said. “When they finally told me it was mesothelioma, I actually felt relieved. That was better than the diagnosis we originally thought I had.”
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 hasn’t spread too far and the patient is in good overall health. Surgery is usually performed as part of a multimodal approach. Multimodal treatment combines surgery with chemotherapy, radiation therapy or another treatment modality.
Experimental treatments have shown promising initial results for mesothelioma patients. Examples include photodynamic therapy and immunotherapy. Patients can access emerging therapies by participating in clinical trials. Eligibility usually depends on the stage and type of cancer.
If a patient’s cancer has progressed to a late stage and spread throughout the body, aggressive treatment may do more harm than good. Specialists can instead focus on palliative care. This kind of care involves alleviating symptoms and increasing quality of life. Complementary and alternative medicines may also benefit the patient.
Karen Selby joined Asbestos.com in 2009. She is a registered nurse with a background in oncology and thoracic surgery and was the director of a tissue bank before becoming a Patient Advocate at The Mesothelioma Center. Karen has assisted surgeons with thoracic surgeries such as lung resections, lung transplants, pneumonectomies, pleurectomies and wedge resections. She is also a member of the Academy of Oncology Nurse & Patient Navigators.
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