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Doctor-Patient Communication An open line of communication between a patient and his or her physician is vital when dealing with a serious disease such as mesothelioma. There will be many questions regarding treatment, whether palliative or aggressive, choices to deal with, and life issues to confront. Being informed and proactive in your care will give you a sense of empowerment. Although most physicians have limited time to spend with each patient at appointments, it is important to address issues as they occur and resolve them to the satisfaction of all parties involved. Initially, this may mean going to your appointment with a list of symptoms or concerns, or questions regarding specific tests that are recommended. Once mesothelioma has been diagnosed, you may have questions regarding treatment options. Most questions from patients stem from an initial diagnosis of mesothelioma and subsequent treatment options. Following are some frequently asked questions regarding these two important issues. What Is My Diagnosis?There are three types of mesothelioma. Pleural mesothelioma is a cancer of the lining of the lung (pleura), peritoneal mesothelioma is a cancer of the lining of the abdominal cavity (peritoneum), and pericardial mesothelioma is a cancer of the lining surrounding the heart (pericardium). Sub-types (or cell types) of mesothelioma are epithelioid (the most common, and considered the most amenable to treatment), sarcomatous (a much more aggressive form), and biphasic or mixed (a combination of both of the other cell types). The structural appearance of cells under the microscope determine the cell or sub-type of mesothelioma. Epithelioid is the least aggressive; sarcomatoid, the most aggressive. The biphasic or mixed cell type shows structural elements of both of the other two. More on the histologic subtypes of mesothelioma.
MESOTHELIOMA STAGES Treatment options are often determined by the stage of mesothelioma a patient is in. There are three staging systems currently in use for pleural mesothelioma and each one measures somewhat different variables; peritoneal mesothelioma is not staged. Staging is the term used to describe the extent of a patient's cancer, based on the primary tumor and its spread in the body. It can help the medical team plan treatment, estimate prognosis and identify clinical trials for which the patient may be eligible. Staging is based on a knowledge of how the cancer develops, from the primary tumor, to the invasion of nearby organs and tissues, to distant spread or metastasis. Staging systems have evolved over time, and they continue to change as scientists learn more about cancer. Some staging systems cover many different types of cancer, while others focus on more specific cancers. The TNM (primary tumor, regional lymph nodes, distant metastasis) is the most common staging system for mesothelioma. Some elements common to most staging systems are:
Many cancer registries, such as the National Cancer Institute's Surveillance, Epidemiology, and End Results Program (SEER) use summary staging, a system used for all types of cancer. Summary staging groups cancer into five main categories:
Several types of testing may be used to help doctors determine stage, and to formulate a treatment plan.
Staging information should be provided to the patient by his doctor so that potential treatment plans can be discussed. Stage of the mesothelioma, as well as consideration of other factors such as age, health status and the patient's wishes may dictate different treatment options. The oldest staging system and the one most often used is the Butchart System which is based mainly on the extent of primary tumor mass and divides mesotheliomas into four stages. The more recent TNM system considers variables of tumor in mass and spread, lymph node involvement, and metastasis. The Brigham System is the latest system and stages mesothelioma according to resectability (the ability to surgically remove) and lymph node involvement. Butchart System – extent of primary tumor mass
TNM System -- variables of T (tumor), N (lymph nodes), M (metastasis)
Brigham System: (variables of tumor resectability and nodal status)
How Was This Diagnosis Determined, and How Accurate Were the Tests? Although you probably took many different tests leading up to your diagnosis, a tissue biopsy is normally the final determining factor. Following are some tests your doctor may recommend, and what may or may not be concluded from these tests.
If the doctor who diagnosed your mesothelioma is your primary physician, he will most likely refer you to a local oncologist for treatment. The oncologist may offer what he or she feels are the best treatment options, or, if their knowledge of this disease is limited, may suggest you seek out a doctor who specializes in mesothelioma. Most often these physicians are located at larger, teaching hospitals such as those listed in the Comprehensive Cancer Center Section. These facilities are ranked as state-of-the-art cancer centers, and are highly respected for their patient care and innovative cancer treatments. If your choice of treatment involves a radical surgical procedure or a clinical trial involving new, as yet unproven drugs, these facilities may be best for you. If your treatment involves an already-approved, standard form of chemotherapy, this can be carried out locally. What Treatment Options Will I Be Offered?Treatment options may vary according to the age and over-all health of the patient, and the extent of the disease. It is important to be informed of all available options for your particular case, so that you can make decision on the option you feel most comfortable with. Surgery, chemotherapy, and clinical trials, as well as new approaches such as photodynamic therapy, immunotherapy, and gene therapy may be offered. Speak openly with your doctor regarding suggested procedures. Questions may include:
In some circumstances, age, contributing health problems, or advanced disease may make aggressive treatment impossible. In these cases, palliative care (that which treats the symptoms, but not the disease itself) may be appropriate. If you opt for palliative care, it is doubly important to communicate fully with your doctor. Many symptoms of mesothelioma can be alleviated or substantially lessened if you are completely open with your doctor. Each time you have an appointment, tell your doctor how you feel, what discomfort you are experiencing, and your level of pain. A good doctor should be willing to address your questions and concerns.
How is mesothelioma diagnosed?
A diagnosis of mesothelioma is most often obtained with careful assessment of clinical and radiological findings in addition to a confirming tissue biopsy. (Learn about typical mesothelioma symptoms.) A review of the patient's medical history, including history of asbestos exposure is taken, followed by a complete physical examination, x-rays of the chest or abdomen, and lung function tests. A CT scan or MRI may also be done at this time. If any of these preliminary tests prove suspicious for mesothelioma; a biopsy is necessary to confirm this diagnosis. Imaging Techniques and Their Value in Diagnosing and Assessing MesotheliomaThere are several imaging techniques which may prove useful when mesothelioma is suspected due to the presence of pleural effusion combined with a history of occupational or secondary asbestos exposure. While these imaging techniques can be valuable in assessing the possibility of the cancer, definitive diagnosis is still most often established through fluid diagnosis or tissue biopsy. Some of the most commonly used imaging methods include:
A needle biopsy of the mass, or the removal and examination of the fluid surrounding the lung, may be used for diagnosis, however, because these samples are sometimes inadequate as far as determining cell type (epithelial, sarcomatous, or mixed) or because of the unreliability of fluid diagnosis, open pleural biopsy may be recommended. In a pleural biopsy procedure, a surgeon will make a small incision through the chest wall and insert a thin, lighted tube called a thoracoscope into the chest between two ribs. He will then remove a sample of tissue to be reviewed under a microscope by a pathologist. In a peritoneal biopsy, the doctor makes a small incision in the abdomen and inserts a peritoneoscope into the abdominal cavity. Once mesothelioma is suspected through imaging tests, it is confirmed by pathological examination. Tissue is removed, put under the microscope, and a pathologist makes a definitive diagnosis, and issues a pathology report. This is the end of a process that usually begins with symptoms that send most people to the doctor: a fluid build-up or pleural effusions, shortness of breath, pain in the chest, or pain or swelling in the abdomen. The doctor may order an x-ray or CT scan of the chest or abdomen. If further examination is warranted, the following tests may be done:
Over the past decade, the use of video-assisted thoracic surgery (VATS) has become one of the most widely used tools in the diagnosis of mesothelioma. Biopsies of the pleural lining, nodules, masses and pleural fluid can now easily be obtained using this minimally invasive procedure, and other therapies such as pleurodesis (talc) for pleural effusions can be done concurrently.While the patient is under general anesthesia, several small incisions or “ports” are made through the chest wall. The surgeon then inserts a small camera, via a scope, into one incision, and other surgical instruments used to retrieve tissue samples into the other incisions. By looking at a video screen showing the camera images, the surgeon is able to complete whatever procedures are necessary In many cases, this video-assisted technique is able to replace thoracotomy, which requires a much larger incision to gain access to the chest cavity, and because it is minimally invasive, the patient most often has less post-operative pain and a potentially shorter recovery period.
For pleural mesothelioma the doctor may look inside the chest cavity with a special instrument called a thoracoscope. A cut will be made through the chest wall and the thoracoscope will be put into the chest between two ribs. This test is usually done in a hospital with a local anesthetic or painkiller. If fluid has collected in your chest, your doctor may drain the fluid out of your body by putting a needle into your chest and use gentle suction to remove the fluid. This is called thoracentesis.
For peritoneal mesothelioma the doctor may also look inside the abdomen with a special tool called a peritoneoscope. The peritoneoscope is put into an opening made in the abdomen. This test is usually done in the hospital under a local anesthetic. If fluid has collected in your abdomen, your doctor may drain the fluid out of your body by putting a needle into your abdomen and using gentle suction to remove the fluid. This process is called paracentesis.
If abnormal tissue is found, the doctor will need to cut out a small piece and have it looked at under a microscope. This is usually done during the thoracoscopy or peritoneoscopy, but can be done during surgery. More on needle biopsies. Pathology and The Role of Pathologists in the Diagnostic Process Pathology, or the scientific study of cells, tissue, or fluid taken from the body is an integral part of a mesothelioma diagnosis. Most hospitals have their own pathology labs staffed by board-certified pathologists and licensed technologists. The importance of pathological diagnosis can not be underestimated, since the course of treatment is dependent upon an accurate diagnosis. To make a diagnosis, pathologists examine tissue under a microscope, and based on established criteria, make a determination of benign vs. malignant cells. (More on biopsy tissue processing.) Subsequently, the type of cancer is determined. Although most pathologists have a general expertise of various diseases, a small number acquire training in a subspecialty, such as mesothelioma. These are physicians who have received world-wide recognition as premier experts, and have achieved high acclaim for their research, published articles and abstracts, and teaching. For a list of expert pathologists in the field of mesothelioma diagnosis, please call the MW toll free at 1-877-367-6376 or fill in the form at the bottom of this page specifying your request. Knowing the stage is a factor in helping the doctor form a treatment plan. Mesothelioma is considered localized if the cancer is confined to the pleura, or advanced if it has spread beyond the pleura to other parts of the body such as the lungs, chest wall, abdominal cavity, or lymph nodes. Immunohistochemical Markers for MesotheliomaA diagnosis of any specific type of cancer often means ruling out other cancers in the process. This is true in the case of mesothelioma, where the most common “differential diagnosis” is that of adenocarcinoma versus mesothelioma. During the biopsy procedure, the surgeon removes tissue samples to be sent to the laboratory. In the lab, slides are produced and then viewed and analyzed by a pathologist. These tissue specimens arrive at the lab with a request form that details patient information and history along with a description of the site in the body from which the specimen was obtained. Each individual specimen is numbered for each patient. The pathologist then does a “gross examination” which consists of describing the tissue, and then placing it in a plastic cassette. The cassettes are then placed in a fixative that preserves the tissue permanently. Once the tissue has been fixed, it is processed into a paraffin block that will allow the pathologist to slice off thin microscopic sections that will then be stained to determine the patient’s diagnosis. Immunohistochemistry is defined as “a method of analyzing and identifying cell types based on the binding of antibodies to specific components of the cell”. It is this process that helps diagnose mesothelioma versus adenocarcinoma (or other types of cancer). Early on, the “markers” which helped distinguish mesothelioma from adenocarcinoma were “negative markers”; those expressed in adenocarcinomas, but not in mesotheliomas. This made it more difficult to confirm a diagnosis, because pathologists were dealing with the absence of, rather than the presence of certain markers. Some of these markers, which are normally “positive” in an adenocarcinoma diagnosis and “negative” in a mesothelioma diagnosis, are carcinoembryonic antigen (CEA), CD 15 (LeuM1), epithelial glycoprotein (Bg8), tumor glycoprotein (BerEp4) and tumor glycoprotein (MOC-31). In more recent years, “positive markers” expressed by mesotheliomas have come to the forefront. Some of the markers which are normally “positive” in mesotheliomas and “negative” in adenocarcincomas are calretinin, cytokeratin 5, HBME-1, mesothelin, N-cadherin, thrombomodulin, vimentin and Wilm’s tumor gene product (WT-1). It is important to remember that while the above markers are commonly used to help diagnose the epithelial sub-type of mesothelioma, that they may also be expressed in other types of cancer, and may not necessarily apply to the bi-phasic or sarcomatoid sub-types of mesothelioma. Your doctor can always contact a more specialized lab if he/she feels your diagnosis is in any way inconclusive.
PAIN AND PAIN MANAGEMENT Mesothelioma patients and their families many times fear physical pain as much as the disease itself. It is important to understand, however, that most cancer pain can be controlled. Nine out of ten cancer patients will find relief by using a combination of medications. No patient should have to deal with unmanaged pain. Causes of Cancer Pain
Each patient's pain is unique, therefore, it is important that each individual have a treatment plan that addresses his/her individual needs. The patient and his/her doctor must work together to reduce unnecessary pain and improve quality of life. Types of PainThe three most common types of cancer pain are:
The type of medicine and the method by which the medicine is administered will depend on the type and cause of the pain. Following is an overview of the types of medicines used to relieve pain. For Mild to Moderate PainNonopioids: Many of these medications are available over-the-counter (without a prescription); others require a prescription. Some drugs included in this category are acetaminophen, aspirin, and ibuprofen. Check with your doctor before using these medications, especially if you are on chemotherapy. For Moderate to Severe PainOpioids: Also known as narcotics, these may include morphine, fentanyl, hydromorphone, oxycodone, meperidine, codeine, and methadone. These drugs are available through prescription only. Nonopioids may be used in conjunction with opioids for moderate to severe pain. For Breakthrough PainRapid-onset Opioids: Available by prescription, this is a short-acting opioid (such as immediate-release oral morphine) which relieves pain quickly. It is used with a long-acting opioid for persistent pain. Side Effects of Pain MedicationMost medications have some side effects, although they may affect different people in different ways and at different levels. Generally, most side effects will occur in the few first few hours of treatment and then will gradually disappear. If side effects persist, the doctor may choose to switch a patient's pain medication to make sure the patient gets maximum pain control with a minimum of side effects. Cancer pain is most often treated with opioid medications. Some of the most common side effects of these drugs are:
More serious side effects are rare, however, if you have trouble breathing, experience dizziness or a rash, call your doctor immediately. Ways of Administering Pain MedicationPain medications may be administered in a variety of ways. Following are the most common:
If one medication or delivery method does not work for you, there is almost always another one that can be tried. Speak frankly with your doctor about the pain medicine or method that works best for you. Click here for more on managing your medications. You may need a different pain medicine or combination of medicines if:
More on pain control. Related: substance abuse among cancer patients
The early symptoms of mesothelioma are generally non-specific, and may lead to a delay in diagnosis. Sometimes resembling viral pneumonia, pleural mesothelioma patients may present with shortness of breath, chest pain and/or persistent cough; some patients show no symptoms at all. A chest x-ray may show a build-up of fluid or pleural effusion (discussed below). The right lung is affected 60% of the time, with involvement of both lungs being seen in approximately 5% of patients at the time of diagnosis. Less common symptoms of pleural mesothelioma include fever, night sweats and weight loss. Symptoms of peritoneal mesothelioma may include pain or swelling in the abdomen due to a build-up of fluid, nausea, weight loss, bowel obstruction, anemia or swelling of the feet. PLEASE KEEP IN MIND THAT THESE SYMPTOMS MAY BE CAUSED BY MESOTHELIOMA OR BY OTHER LESS SERIOUS CONDITIONS. ONLY A DOCTOR CAN MAKE A DEFINITIVE DIAGNOSIS. Information on the symptoms, diagnosis, staging, and treatment of peritoneal mesothelioma. Information on the symptoms, diagnosis, staging, and treatment of pleural mesothelioma. Pleural EffusionOne of the most common symptoms of mesothelioma is a pleural effusion, or an accumulation of fluid between the parietal pleura (the pleura covering the chest wall and diaphragm) and the visceral pleura (the pleura covering the lungs). Both of these membranes are covered with mesothelial cells which, under normal conditions, produce a small amount of fluid that acts as a lubricant between the chest wall and the lung. Any excess fluid is absorbed by blood and lymph vessels maintaining a balance. When too much fluid forms, the result is an effusion. TypesPleural effusion is broken down into two categories, transudates and exudates. A transudate is a clear fluid that forms not because the pleural surfaces are diseased, but because of an imbalance between the normal production and removal of the fluid. The most common cause of transudative fluid is congestive heart failure. An exudate, which is often cloudy and contains many cells and proteins, results from disease of the pleura itself, and is common to mesothelioma. To determine whether a fluid is a transudate or exudate, a diagnostic thoracentesis, in which a needle or catheter is used to obtain a fluid sample, may be conducted. SymptomsAs the volume of fluid increases, shortness of breath, known as "dyspnea", and sometimes pain, ranging from mild to stabbing, may occur. Some patients may experience a dry cough. When the doctor listens to the patient’s chest with a stethoscope, normal breath sounds are muted, and tapping on the chest will reveal dull rather than hollow sounds. DiagnosisDiagnosis of pleural effusion is usually accomplished with a simple chest x-ray, although CT scans or ultrasound may also be used. A special x-ray technique, called a lateral decubitus film, may be used to detect smaller effusions or to enable the physician to estimate of the amount of fluid present. If the underlying cause of the effusion is readily apparent (such as in the case of severe congestive heart failure), sampling of the fluid may not be necessary, however, because pleural effusion may be symptomatic of a number of disease processes from benign to malignant, a fluid sample is generally taken. Diagnostic thoracentesis, in which cells are extracted from the pleural cavity, is commonly done when the possibility of mesothelioma exists, however, in up to 85% of cases, the fluid tests negative or inconclusive even though cancer is present. It is ultimately a needle biopsy of the pleura (lining of the lung) or an open surgical biopsy which confirms a mesothelioma diagnosis. TreatmentPleural effusion caused by heart failure or infection can usually be resolved by directing treatment at the cause, however, when testing has realized no diagnosis, and fluid continues to build or recur, doctors may recommend chest tube drainage and chemical pleurodesis. Chemical pleurodesis is a technique in which a sclerosing agent is used to abrade the pleural surfaces producing an adhesion between the parietal and visceral pleurae. This will prevent further effusion by eliminating the pleural space. Talc appears to be the most effective agent for pleurodesis, with a success rate of nearly 95%. It is highly effective when administered by either poudrage or slurry. Poudrage is the most widely used method of instilling talc into the pleural space. Before spraying the talc, the medical team removes all pleural fluid to completely collapse the lung. After the talc is administered, they inspect the pleural cavity to be sure the talc has been evenly distributed over the pleural surface. Some doctors prefer to use talc mixed with saline solution which forms a wet slurry that can roll around the pleural cavity.
At some point in our lives, nearly all of us have been exposed to asbestos in the air we breathe and the water we drink; from natural deposits in the earth, and from the deterioration of asbestos products around us. Most of us, however, do not become ill as a result of our exposure. More commonly, those who at some point are diagnosed with asbestos disease, have worked in jobs where more substantial exposure occurred over longer periods of time. Nevertheless, cases of mesothelioma have been documented as the result of lesser exposure, affecting family members of workers who came into contact with asbestos and brought it home on their clothing, skin or hair, or affecting those who lived in close proximity to asbestos manufacturing facilities. Symptoms of asbestos disease usually are not be apparent until decades after exposure. Asbestos was used commercially in North America as early as the late 1800s, but its use increased dramatically during the World War II era when shipyards produced massive numbers of ships for the war effort. Since that time, asbestos-containing products were used by the construction and building trades, the automotive industry and the manufacturing industry. All told, more than 5,000 products contained asbestos. For more than 50 years, products containing asbestos remained unregulated, and the manufacturers of those products continued to prosper, knowing full well that many of the millions of workers who came into contact with their products would ultimately suffer as the result of their actions. Finally, in the late 1970s, the Consumer Products Safety Commission banned the use of asbestos in wallboard patching compounds and artificial ash for gas fireplaces because the fiber could easily be released during use. In 1989, the Environmental Protection Agency banned all new use of asbestos, but uses established prior to that time were still allowed. Although awareness of the dangers of asbestos and public concern over the issue have led to a decline in domestic consumption over the years, a total ban on asbestos has not come to fruition. Asbestos is still imported, still used and still dangerous. Although it is suggested that the number of mesothelioma cases in the U.S. has reached its peak and has begun to drop, a forecast released by the National Cancer Institute's Surveillance, Epidemiology, and End Results Program (SEER), in April, 2003, projected the total number of American male mesothelioma cases from 2003-2054 to be approximately 71,000. This number, however, does not take into consideration events such as the World Trade Center disaster on September 11, 2001, when millions of New Yorkers were potentially exposed to air filled with carcinogenic asbestos particles. When the latency period for asbestos disease is factored in, cases of mesothelioma will continue to be diagnosed for years to come. See our page on mesothelioma risk factors.
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