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Dr. Michael Shapiro has developed a program that should make breathing easier for a patient with malignant pleural mesothelioma. He equates his breathing program to teaching an elite athlete how to better utilize his lung capacity by using similar concepts that assist people struggling with serious respiratory issues in hospice care. “We’re not reinventing the wheel, by any stretch of the imagination,” Shapiro told Asbestos.com. “But there are ways to teach people, at all levels, to breath more efficiently. Our goal is to help provide a better quality of life for a patient.” Shapiro is the chief medical officer at Cornerstone Hospice and Palliative Care in Central Florida. His novel Dyspnea Self-Management Program (DSMP) is now in its second year of showing impressive effectiveness. He presented his DSMP at the National Partnership for Hospice Innovation Medical Affairs Forum in Phoenix last week. Avoiding Anxiety and Emergency Rooms DSMP is a nonpharmacologic management protocol that helps patients avoid the need for additional medication, severe anxiety and rushed trips to the emergency room when simple breathing becomes overly strained. His program is especially relevant for the treatment of pleural mesothelioma, the rare and aggressive cancer that starts in the thin membrane surrounding the lungs and is marked by tumors and inflammation that restrict the normal breathing process. As the disease progresses, breathing becomes more arduous. Even mild physical activity that once was taken for granted becomes a major undertaking when the lungs no longer operate properly. Patients often find themselves gasping for breath. “The whole concept of the program is to try and train someone to breathe in a much more relaxed and effective pattern,” Shapiro said. “Whether you have pleural mesothelioma, lung cancer or COPD, we can’t change what is making you short of breath, but patients can try and re-learn effective breathing techniques.” Part of the program involves breaking the cycle where a sudden shortness of breath causes severe anxiety that quickly leads to a worsening of good breathing habits. Making Patients Feel Comfortable Patients typically begin the program with an assessment period, biofeedback analysis, and making sure that patients and caregivers are properly using the equipment they already have. The correct use of inexpensive devices, such as a nebulizer, an incentive spirometer or a hand-held fan sometimes can make a difference. “Part of the program is just making sure that patients and families feel confident in what they are doing,” he said. “That can be very important. We are looking for how we can help with these symptoms without utilizing drugs, doing this in an adjuvant setting.” The program also includes simple techniques that include pursed-lip breathing, which allows the lungs to take in more air with each breath, and diaphragmatic breathing, which slows down the breathing process and helps relax the body. “This is not rocket science,” he said. “People who have breathlessness often develop poor breathing habits. Poor form. This is about relearning how to breathe sometimes.” It Takes Training to Breathe Correctly The program includes physical and psychological training. He relates the program to other levels of training. “Like anyone’s form, whether you are running, lifting weights or breathing, the more tired you get, the worse the form will get,” he said. “The way to keep the form in line is to train, which first, will give you more endurance, and second, will give you the muscle memory to help you do it correctly.” Shapiro said that the DSMP protocol has been used in all interdisciplinary care units within the Cornerstone Hospice and Palliative Care umbrella that covers seven counties. It has been used with more than 150 patients, significantly reducing the number of shortness of breath episodes that required a trip to a hospital emergency room. “A shortness of breath can be distressing for patients and family,’’ he said. “We can’t take away the cause, but we can give them the tools to manage it. We can educate and empower them to have a sense of control. And hopefully, it adds to the quality of life.”

Common malignant pleural mesothelioma symptoms include shortness of breath, chest pain, persistent dry or raspy cough, coughing up blood and difficulty swallowing. Patients rarely mention weight loss and fatigue during their initial doctor visit. These symptoms may show if the cancer is advanced. Some patients develop swelling of the face or arms, back pain or nerve pain. For many people, mesothelioma symptoms are not noticeable until the cancer is in a later stage. While there is no defined cost for pleural mesothelioma treatment, the average cost of a major lung surgery, which may be comparable to mesothelioma, is almost $40,000. Costs vary by treatment plan, but they are never cheap. Chemotherapy and radiation treatments can easily add up to thousands of dollars a month. A cancer diagnosis can also lead to lost wages, professional caregiving expenses and costs due to traveling for treatment. Financial planning is essential to making sure you can handle pleural mesothelioma’s impact on your budget. Fortunately, help is available. Patients can receive assistance from nonprofit organizations dedicated to cancer patients. Government programs such as Social Security also help. Veterans with mesothelioma can receive low-cost medical treatment through their VA benefits. They can receive extra financial assistance if their cancer was caused by military asbestos exposure. All mesothelioma patients may be able to file a claim with a trust fund set up by the liable company. Financial assistance is also available through legal settlements and personal injury lawsuits. Victims of asbestos exposure caused by corporate negligence have a right to legal compensation. Cancer recurrence Improving Your Prognosis By taking proactive steps, it is possible to live longer and better with malignant pleural mesothelioma. Some patients even achieve remission after treatment and are able to live for years with almost no cancer symptoms. The inspiring stories of mesothelioma survivors reveal many different ways to confront the challenge of cancer. However, many survivors make the same basic choices to promote their well-being.

The beginning symptoms of peritoneal mesothelioma include abdominal distension, abdominal pain, swelling or tenderness around the abdomen and constipation or diarrhea. Many of the treatment options for peritoneal mesothelioma are similar to those of other asbestos-related cancers. However, the most promising treatment is a combination of surgery and heated chemotherapy. Patients have credited that treatment for prolonged survival. Important Facts About Peritoneal Mesothelioma It accounts for less than 20 percent of all mesothelioma cases. Surgery and heated chemotherapy are the most effective treatments. Immunotherapy for this type is available through clinical trials. Peritoneal patients generally live four times longer than pleural mesothelioma patients. The survival rate of someone diagnosed with peritoneal mesothelioma depends on the stage of the cancer, types of treatments the patient undergoes and the quality of the specialist treating the patient. Surgery plays a major role in long-term survival. Patients who don’t qualify for surgery live around one year. About half of patients who undergo surgery and heated chemotherapy are alive more than five years later. Although clinical trials for peritoneal mesothelioma are not as abundant as those for pleural mesothelioma, researchers are studying whether immunotherapy combined with chemotherapy could play a bigger role in controlling the cancer by boosting the body’s immune system. Pleural mesothelioma is a cancer that develops in the cells that form the outer lining of the lungs and inner lining of the chest cavities. It is the most common type of asbestos-related cancer. Clinical trials offer access to new treatments such as immunotherapy. All types of mesothelioma are named after the location where they form. It usually takes from 20 to 50 years for mesothelioma to develop after a person’s first exposure to asbestos. Because of this latency period, the disease usually affects people older than 75. Most patients are men because they were the majority of the workforce in professions, including heavy industry and construction, where asbestos exposure historically occurred. Initial symptoms of malignant pleural mesothelioma include chest pain and shortness of breath. You may experience no symptoms at all in the early stages of the cancer’s progression. The life expectancy of someone with pleural mesothelioma is often less than 18 months, but it depends on many factors. Some patients live much longer with treatment. Combining several treatments, such as surgery, chemotherapy and radiation therapy, has helped people live for years after being diagnosed with pleural mesothelioma. Clinical trials offer access to new treatments such as immunotherapy. Asbestos causes malignant pleural mesothelioma decades after a person inhales asbestos dust. The mineral’s needle-like fibers lodge in the lungs and gradually migrate into the pleural lining. Plaque forming on the pleural lining of the lungs Over a long period of time, asbestos fibers cause irritation, chronic inflammation and genetic changes that turn cells cancerous. These cancerous cells grow fast and uncontrollably, threatening the organs around them. Two layers make up the pleura lining. The outer layer lines the entire inside of the chest cavity, and the inner layer covers the lungs. A malignant tumor can develop on either layer and quickly spread to the other layer. As tumors develop on the pleural surface, they grow to form a mass around the affected lung. Surgery Surgery is the most promising traditional treatment option for peritoneal mesothelioma in the abdomen, but it is only effective for early-stage cancer. Because doctors most commonly diagnose asbestos-related diseases after the cancer has spread, most surgeries only attempt to remove sections of the tumor. Surgery can be curative or palliative. Curative surgery aims to remove as much of the tumor as possible in hopes of curing the cancer. Otherwise, doctors may perform palliative surgery, which aims to remove parts of the tumor to relieve symptoms, including bowel obstruction, extend survival and improve quality of life. Palliative therapies do not stop the cancer. Tumor spread is usually too vast once it reaches beyond the abdomen for surgery to completely remove the cancer. Surgery with a curative intent is not recommended after the cancer has spread. However, a surgery to remove the majority of tumors may be performed to alleviate pain and improve symptoms such as abdominal distention and pain. Typical surgeries include peritonectomy and cytoreductive surgery, bowel resection and removal of some organs. Another minor surgical procedure, known as paracentesis, is commonly used on peritoneal mesothelioma patients. A small incision in the abdomen is made to withdraw excess peritoneal fluid, called ascites. This procedure reduces abdominal swelling and pain. LEARN MORE ABOUT MESOTHELIOMA SURGERIES Chemotherapy Chemotherapy drugs can shrink peritoneal mesothelioma tumors and slow the growth and spread of cancer. It can be given before, during or after surgery. In some cases, doctors offer chemotherapy as the only treatment option. Chemotherapy drugs considered effective against peritoneal mesothelioma include pemetrexed, cisplatin, carboplatin and gemcitabine. In 2017, Dr. Paul Sugarbaker reported improved survival among patients who received early post-operative chemotherapy and long-term chemotherapy after cytoreductive surgery with HIPEC. All chemotherapy was intraperitoneal chemotherapy, meaning it was applied only to the peritoneum. No systemic chemotherapy was used in the study. Of the 29 patients who had surgery with HIPEC, post-operative chemotherapy and long-term chemotherapy, 75 percent lived longer than five years. In appropriate patients, the main treatment will be cytoreductive surgery with HIPEC. The surgical part removes all gross tumors with residual deposits smaller than 2 mm. The HIPEC treats the residual tumor and microscopic cancer cells the surgeon can’t see. LEARN MORE ABOUT CHEMOTHERAPY FOR MESOTHELIOMA Radiation Therapy Some studies show radiation therapy can improve peritoneal mesothelioma survival slightly when combined with surgery and chemotherapy. However, doctors tend not to recommend radiation for these patients. Even though targeted radiation can shrink tumors and slow cancer growth, the procedure is risky because of the location of these tumors. The peritoneum wraps around the stomach, liver and intestines. Aiming radiation at nearby tumors could harm these organs and cause life-threatening damage. LEARN MORE ABOUT RADIATION THERAPY Alternative Treatments Alternative treatments and emerging therapies are available, but these treatments have less predictable outcomes. Immunotherapy boosts the body’s immune system to help fight cancer. Research on this emerging therapy mainly focuses on the treatment of pleural mesothelioma, which develops in the lining of the lungs. Many patients find hope in clinical trials, which are medical studies that test new and experimental treatments. Research from clinical trials helps improve treatment outcomes for future patients. LEARN MORE ABOUT ALTERNATIVE TREATMENTS

Mesothelioma in the Peritoneum The peritoneum is a protective membrane that surrounds the abdomen. It has two layers, and peritoneal mesothelioma can develop on both. The parietal layer covers the abdominal cavity. The visceral layer surrounds the stomach, liver and other organs of the abdomen. Together, the layers support the abdominal cavity and its organs. What Causes Peritoneal Mesothelioma? Asbestos exposure is the primary cause of peritoneal mesothelioma, also known as abdominal mesothelioma. Researchers believe asbestos fibers can reach the peritoneum via two pathways: Swallowed asbestos fibers travel from the digestive system to the peritoneum. Inhaled asbestos fibers reach the peritoneum through the lymphatic system. Research on other causes of abdominal mesothelioma is scarce. Evidence shows other fibrous minerals, such as erionite, and radiation to the abdomen trigger some cases of this disease. Once asbestos fibers reach the peritoneum and irritate the cells, the peritoneal lining starts to thicken. The buildup of excess abdominal fluid, known as ascites, may occur next. Once tumors form, they begin to place pressure on the organs. Early symptoms of peritoneal mesothelioma can include abdominal pain, swelling, diarrhea and constipation. Unfortunately, some patients don’t experience any symptoms until tumors spread. This scenario makes treating the disease hard and surviving it even harder. Common peritoneal mesothelioma symptoms include: Abdominal pain or swellingDiarrhea or constipationChanges in bowel habitsA feeling of fullnessNight sweats or feverUnexplained weight lossNausea or vomitingFatigueAnemia Around 20-50 years pass after your first exposure to asbestos before peritoneal mesothelioma begins to develop. The latest advances in medical technology allow doctors to diagnose this disease earlier than ever before. Yet, experienced cancer doctors can struggle to diagnose it accurately. In fact, the process can take months. The process of diagnosing peritoneal mesothelioma is like other types of mesothelioma. It starts with a thorough examination of your medical history, occupational history and overall physical condition. A series of tests, including imaging scans and biopsies, usually follows. Diagram showing that peritoneal mesothelioma accounts for 10 to 20 percent of all mesothelioma cases Peritoneal mesothelioma accounts for 10-20 percent of all diagnosed cases. Be sure to mention any history of asbestos exposure, even if your doctors forget to ask. It’s important to share every detail you can remember. This includes dates when the incidents occurred and the length and duration of the exposures. This information will alert your doctors about the possibility of an asbestos-related disease and help them determine the appropriate next steps. Vague abdominal discomfort is very nonspecific, making the history of asbestos exposure important in guiding diagnostic tests. Misdiagnosis Because this cancer is so rare, doctors lacking experience with the disease often misdiagnose mesothelioma patients with more common illnesses that share similar symptoms. This is a serious misstep that delays proper treatment. Peritoneal mesothelioma symptoms, such as abdominal swelling, weight loss and hernias, also arise in other abdominal cancers and many less serious conditions. This overlap of symptoms increases the likelihood of a misdiagnosis. If you have a history of asbestos exposure, the best way to ensure an accurate diagnosis is to schedule an appointment with a specialist. Doctors who specialize in mesothelioma have the knowledge and tools needed to make a prompt diagnosis. They can explain all the mesothelioma treatment options available to you. LEARN MORE ABOUT MISDIAGNOSIS Imaging Scans When a patient is experiencing symptoms, doctors likely will ask for a chest X-ray, CT scan or another type of imaging scan. These tests will detect potential tumors and show any cancer spread. They also help doctors choose the best biopsy locations. It’s important to note that a CT scan can diagnose ascites (fluid in the abdomen). In the absence of liver disease, it is extremely important to pursue the cause of ascites. LEARN MORE ABOUT IMAGING SCANS Biopsies Biopsies are minor procedures that extract fluid and tissue samples for inspection under a microscope. This is an essential step in the diagnostic process because only a biopsy confirms a peritoneal mesothelioma diagnosis. Sometimes doctors need to perform a laparoscopic surgical biopsy, which is more invasive. In both cases, pathologists look to see if lab results show cancerous cells in your peritoneal fluid or tissue. Testing biopsy samples with chemicals called antibodies is important for confirming a mesothelioma diagnosis. Antibodies used to confirm peritoneal mesothelioma include calretinin and podoplanin. LEARN MORE ABOUT BIOPSIES Talk to a Doctor About Your Diagnosis We can help you or a loved one get a diagnosis or a second opinion from a peritoneal mesothelioma specialist. GET STARTED TODAY Peritoneal Mesothelioma Cell Types Mesothelioma tumors are composed of cells classified by their structure and composition. The three major cell types of peritoneal mesothelioma include epithelioid, sarcomatoid and biphasic. Epithelioid mesotheliomas are the most common and respond best to treatment. Sarcomatoid cells are the least common and respond poorly to treatment. Biphasic tumors are made of epithelial and sarcomatoid cells. The response of biphasic mesothelioma to treatment depends on the ratio of epithelioid to sarcomatoid cells. Because rare subtypes of these cells exist, pathologists face challenges in diagnosing cancer in the abdomen. Additional histological variances of peritoneal mesothelioma include adenoid cystic, tubulopapillary, microcystic, signet ring, diffuse, not otherwise specified (NOS), pleomorphic and well-differentiated papillary. A patient’s cell type can significantly impact their prognosis. Mesothelioma patients with epithelioid tumors live an average of 200 days longer than patients with sarcomatoid tumors. Examples of rare cell subtypes include: Lymphohistiocytoid mesothelioma An often misdiagnosed type of sarcomatoid mesothelioma. When it develops alongside epithelial cells, a biphasic peritoneal mesothelioma diagnosis is made. Desmoplastic mesothelioma A type of sarcomatoid cell that occurs in peritoneal and pleural mesothelioma. The cells are composed of more than 50 percent fibrous tissue that produces collagen. Deciduoid mesothelioma A rare variant of epithelial mesothelioma. It has been diagnosed in roughly 45 mesothelioma cases. Around half of deciduoid cases develop in the abdomen. How Is Peritoneal Mesothelioma Staged? Imaging scans help doctors estimate the stage of the mesothelioma. These tumors initially form on the lining of the abdomen. As the tumors grow and spread, they migrate outside the lining to lymph nodes and distant organs. For decades, peritoneal mesothelioma experts developed their own staging system because an official one didn’t exist. Since then, researchers have proposed three stages. A fourth stage is not yet clearly defined. It is generally accepted that patients with extensive tumor spreading are classified as stage IV. 3 Stages of Peritoneal Mesothelioma Stage 1 Cancerous tissue is minimal and tumors are contained within the abdominal lining, and lymph nodes are free of cancer. Stage 2 Cancerous tissue is moderate and tumors have not spread outside the lining or to lymph nodes. Stage 3 Cancerous tissue is more extensive and tumors may have spread outside the peritoneal lining, to lymph nodes or both. Treatment Options for Peritoneal Mesothelioma Although an increasing number of specialists have emerged as treatment leaders for abdominal cancer in recent years, the total number of peritoneal mesothelioma specialists remains small. If there are no peritoneal malignant mesothelioma specialists nearby, you may consider one in a neighboring state. Treatment for this type of mesothelioma includes surgery, chemotherapy and experimental therapies such as immunotherapy. Doctors believe combining traditional treatments often works better than any single treatment. A combination of one or more treatments is called multimodal therapy. Research shows that a multimodal treatment approach usually offers the best improvement in terms of survival. The most promising peritoneal mesothelioma treatment is cytoreductive surgery combined with heated intraperitoneal chemotherapy (HIPEC). While doctors only perform surgery with HIPEC on a case-by-case basis, it has extended survival and improved quality of life. In studies on small groups of patients, around half lived five years or longer. To qualify for surgery with HIPEC, a patient’s cancer must be limited enough for doctors to completely remove with surgery and not have spread beyond the abdomen. In addition, qualifying patients must be physically fit in order to tolerate the stress of anesthesia and surgery.