At a heart-stopping doctor’s appointment in November of 2009, Joanne D. learned she had pleural mesothelioma.
“It was a heart-wrenching moment. I felt like I was hit in the gut. I was lost for words. All I wanted to do was scream. I didn’t know what to do or where to turn to for help,” Joanne said in an interview with the Pleural Mesothelioma Center.
She has come a long way since the day she was diagnosed, but her journey hasn’t been easy.
After seeking a specialist and receiving a second opinion, Joanne trusted Dr. David Sugarbaker at Brigham & Women's Hospital with her care. Dr. Sugarbaker ordered a pleurectomy, a surgery to remove the lining of the lungs.
“I may have been diagnosed with mesothelioma, but I am going to be a survivor of this disease. You can bet on that,” she said. Joanne hopes her story will encourage other pleural mesothelioma patients.
“Attitude is everything,” she said. “It’s what gets you to the next step as a survivor. And don’t underestimate the power of a support system. My friends and family have been everything. Don’t be afraid to ask for help.”
Pleural mesothelioma is associated with a poor prognosis, but more survivors today have proven that newer, better therapies and specialized care are changing the face of the disease.
Sometimes it’s not the statistics that provide hope, but the words from survivors or the strength from the fighters.
There is hope. Patients are living longer, better lives. Personalized medicine is working. The days of a diagnosis and an automatic six- to 18-month forecast are over. Progress has been slow, but progress is steady.
There is still no cure for pleural mesothelioma, but there are curative measures available.
Survivors of pleural mesothelioma are telling their stories, providing insight into why and how some patients are beating the odds. Some live two years and beyond. Some have reached five years.
“I tell people all the time, don’t just take what the first doctor tells you and accept it. That’s wrong. Get other opinions and see what is out there,” said Kathleen A. from Wisconsin, who was diagnosed in 2010. “There are treatments that are working. Find them.”
Kathleen still wears the button her son gave her, which reads, “I’m a patient with no patience.” And it describes her attitude well. She didn’t like the first diagnosis she was given because it offered little hope and few choices. She insisted on second and third opinions and opted instead for an aggressive pleurectomy/decortication surgery with Dr. Tracey Weigel at the Carbone Cancer Center. She recovered quicker than expected and resumed traveling the country. She believes her aggressive treatment and her faith have carried her. “I don’t know how anyone can get through cancer if they don’t have God in their life,” she said. “I think that’s big.”
Tim C. passed the 10-year survivor mark in 2012, grateful to see his two oldest children go to college and get married. He credits the aggressive extrapleural pneumonectomy surgery for allowing him to survive this long. He was diagnosed younger – in his 40s -- than most pleural mesothelioma patients, and he responded well to the treatment plan he received in Boston with noted surgeon David Sugarbaker. In the last 10 years, he traveled extensively, including a motorcycle trip across the country. “Controlling the pain has been a constant battle for me,” he said. “That’s no fun, but I’ve done a lot these last 10 years. I didn’t sit around. I lived another lifetime.”
Diagnosed: 1990 and survived for 20 years
Judy G. was diagnosed with pleural mesothelioma in 1990 and lived until 2010. She strongly believed in the power of alternative medicine, including meditation, massage therapy and nutritional remedies, in addition to surgery. Her story is told in the book Surviving Mesothelioma: Making Your Own Miracle.
From: New Jersey
David C. is a Marine Corps veteran from New Jersey. He was diagnosed with pleural mesothelioma in 2005 and had an EPP performed by Dr. David Sugarbaker at Brigham & Women's Hospital. Six years later, he was dancing the night away at his grandson’s wedding reception.
Marlyn L. worked as a hair stylist for 25 years before she was diagnosed with pleural mesothelioma at the age of 47. After the doctors at the Naval Medical Center in Maryland took a biopsy and determined her diagnosis, she was referred to Dr. Valerie Rusch in New York. Her tumor was large, so she started chemotherapy right away. Dr. Rusch later removed the tumor, five upper ribs and a portion of her right lung. Although she can no longer style hair, she never gave up her fight and still travels with her husband.
Jodi P. was diagnosed with pleural mesothelioma at the young age of 26. After receiving an initial misdiagnosis of pneumonia twice and two different mesothelioma diagnoses with different stages and treatment options, Dr. Claude Deschamps performed an extrapleural pneumonectomy to treat the mesothelioma, followed by chemotherapy and radiation. Jodi celebrated her 30th birthday by going skydiving, a goal she has always had.
Bob O. was diagnosed with pleural mesothelioma in 2005 and was given 18 months to live, which convinced him to do things his way. He elected to undergo a pleurectomy/decortication, but he opted for no chemotherapy or radiation. Instead, he altered his diet to add in loads of antioxidants to boost his immune system, and stayed active. Many years later, he was able to go fishing almost every day.
Diagnosed: February 2010
Andy A. spent 20 years of his life in the home improvement industry, where he was regularly exposed to asbestos, and was diagnosed with pleural mesothelioma in 2010. He looked to specialist Dr. David Jablons for his care and enrolled in a clinical trial involving Amatuximab (MORab-009), an immunotherapy drug. Andy is still going strong, thanks to his positive response to the clinical trial.
Diagnosed: June 2011
Sydney R. was diagnosed with pleural mesothelioma in June 2011 and was given 12-18 months to live. She didn’t like that prognosis, so she did her own research, got second and third opinions, questioned everything her specialists said and did all she could to get the best possible treatment. To date, she has had a pleurodesis, multiple rounds of chemotherapy and radiation, a pleurectomy and a pneumonectomy and is ready to keep fighting.
Survival rates of pleural mesothelioma are based on a number of factors, including stage of the disease, age and overall health of the patient, location of the tumors and strength of the patient’s immune system.
Another huge factor is the care a patient receives and the doctor who is spearheading the treatment. Because many medical professionals rarely see pleural mesothelioma, it’s important for patients to find a mesothelioma specialist who understands the intricacies of this rare disease and a cancer center that knows how to treat it effectively.
A multimodal approach that includes a combination of surgery, radiation and chemotherapy has worked well for some. Others have found success with clinical trials testing immunotherapy, which uses the patient’s own immune system to fight the disease.
Another reason for varying survival rates is the constant advances in medicine. Standard treatments have improved – better chemotherapy delivery, more advanced surgical techniques, radiation advancements – as well as alternative treatments that have worked to varying degrees for pleural mesothelioma patients.
One of the most critical factors in survival is early detection, which increases the treatment options and improves the odds of a lengthy survival. One of the biggest problems with pleural mesothelioma is that it often is not diagnosed until it has metastasized beyond the lining around the lungs.
It can take anywhere from 20-50 years after exposure to asbestos before pleural mesothelioma is diagnosed. The early signs often mirror those of less serious ailments, which delays effective treatment.
Anyone who worked with asbestos products should speak to their family doctor about that exposure. The development of new blood tests and better imaging tests can lead to an earlier diagnosis, which can mean curative instead of primarily palliative treatments.
Clinical trials often offer the latest and most up-to-date therapies that have not been approved yet. Genetic therapy and immunotherapy are just two of the options that are part of clinical trials offered at various centers.
Some survivors have benefited from trying a clinical trial involving pleural mesothelioma. Patients can participate while still having conventional treatment.
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