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 such a rare and complex cancer that most physicians and many oncologists rarely see it and don’t fully understand how it works. Getting an accurate mesothelioma diagnosis and developing a comprehensive treatment plan requires experienced specialists who understand all the intricacies of this cancer.
If you have a history of potential exposure to asbestos and new chest-related symptoms or problems, it is vital to find a specialist who can diagnose or confirm your condition 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 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 because 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, delaying the right diagnosis and treatment plan.
Many of mesothelioma’s early symptoms, such as a persistent cough, shortness of breath, chest discomfort and night sweats, can mimic those of a less serious illness and be dismissed initially.
Patients with pleural mesothelioma, which starts in the lining around the lungs, often are told they have pneumonia or asthma, only to learn six to nine months later they had a much more serious illness brewing all along.
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 eventually learning they have a deadly form of cancer.
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, and peritoneal mesothelioma can be misdiagnosed as ovarian cancer. Mesothelioma can also be misdiagnosed as adenocarcinoma, a cancer that forms in the mucus-secreting glands in the body.
Within mesothelioma itself, the types of mesothelioma cells vary. Whether a patient has epithelioid mesothelioma or sarcomatoid mesothelioma, or some mixture of the two, has a major impact on their prognosis.
It is also possible to misjudge the stage of the cancer. Staging is a way to measure how far the cancer has progressed, and 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, but finding it earlier gives you more treatment options and a better chance at long-term survival. It’s another reason seeing a specialist early in the process is so important.
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. every year, and there are a limited number of specialists and cancer centers with the resources and experience to give their 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
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, or scans also show thickening of the pleural or peritoneal lining, then 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 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), which 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 extracted, a pathologist reviews it under a microscope to identify the cancer and its cell type.
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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 possible asbestos exposure, make sure you discuss it with your doctor, and 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 with earlier stages of this cancer usually qualify for more aggressive treatment options with a higher chance of extending their life expectancy.
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 in combination with chemotherapy, radiation or another treatment modality.
Experimental treatments, such as photodynamic therapy and immunotherapy, have shown promising initial results for mesothelioma patients. Patients can access emerging therapies by participating in clinical trials, but 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 in many cases. Specialists can instead focus on alleviating symptoms and increasing quality of life, tailoring treatments to be less invasive or toxic. Complementary and alternative medicines may also benefit the patient if standard treatment options are limited.
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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