Everyone diagnosed with mesothelioma is strongly encouraged to find a specialist who understands the intricacies of this rare cancer. Because the disease represents only 0.3 percent of all diagnosed cancers, only a select number of doctors have experience treating mesothelioma. Working with a mesothelioma-focused specialist could make all the difference.
Pleural mesothelioma is the most common type of the cancer, representing more than 75 percent of all cases. Still, given the rarity of the disease, thoracic (chest) doctors who specialize in pleural mesothelioma are few and far between.
Several surgeons across the country have emerged as leaders in the field of mesothelioma cancer, utilizing the most advanced treatment methods to give patients a longer life expectancy. These doctors often work at prestigious hospitals equipped with the latest technology and multidisciplinary teams. Many are involved with ongoing clinical trials.
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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“Thank you, Missy. Thank you for helping us find such a thorough doctor who double-checked pathology and determined what we are dealing with. We appreciate you and your help more than you know. I want you to know the significant impact you have made on our lives, and I am certain numerous others’. We have many blessings to be thankful for, and you are one of them.”
– Christi, Keith and family.
Peritoneal mesothelioma, which develops on the protective lining surrounding the abdominal cavity, accounts for roughly 20 percent of malignant mesothelioma cases. A surgical oncologist with experience treating peritoneal mesothelioma and performing complex abdominal surgeries is a patient’s best option.
The number of peritoneal mesothelioma specialists remains small, but these doctors are involved with major breakthroughs for treating the rare cancer, including the promising heated intraperitoneal chemotherapy (HIPEC) — a process that combines surgery and heated chemotherapy delivered directly to the abdomen.
Only a select few cancer centers across the country are equipped to perform HIPEC treatments.
Treating mesothelioma is a delicate and time-sensitive process. The cancer is associated with a long latency period, but it typically spreads once it is diagnosed.
Because mesothelioma is rare, it may be misdiagnosed as other cancers or less serious conditions. Early diagnosis and treatment can have a significant effect on a patient’s prognosis and life expectancy.
I can’t tell you the amount of people I’ve talked to who are no longer here because they got treated by an oncologist and not a mesothelioma specialist. It happens so often.”
– Kasie Coleman, peritoneal mesothelioma survivor diagnosed in 2010
Finding a mesothelioma specialist can ensure you get access to the latest treatments and care from an oncologist familiar with the rare cancer. A specialist knows the risks, potential side effects and other intricacies of mesothelioma treatments.
That familiarity helps the doctor connect with the patient and form the best treatment plan possible.
And although they share some similarities, it is important to choose a doctor who specializes in your particular type of mesothelioma. For example, an oncologist specializing in pleural mesothelioma cancer wouldn’t be the ideal choice for peritoneal patients or vice versa.
Many mesothelioma survivors credit their specialists for their extended life expectancy and travel long distances to continue treatments and checkups with their doctor.
One of the most important concerns when choosing a doctor is finding one you can trust completely. You will want to evaluate the doctor’s expertise and get a sense of how comfortable you feel with the head of the team charged with trying to save your life.
In fact, building a good relationship with your health care team ensures everyone — you, your loved ones, your doctors and nurses — can efficiently communicate with each other.
Once you choose a mesothelioma specialist, you will likely still have plenty of questions that need answering. Every mesothelioma specialist is different, and each may have a unique way of relaying information or answering questions.
You have to trust somebody who’s going to tell you that you have a 50 percent chance of not coming off the operating table. They have to sell themselves to you, too.”
– Raeleen Minchuk, peritoneal mesothelioma survivor diagnosed in 2014
Don’t shy away from tough questions, and consider taking a notepad or journal with you to help you remember and organize important dates, facts and other useful details.
One of the most common questions asked is about a patient’s chance of survival. After a specialist knows the stage of your cancer, they will be able to provide your estimated mesothelioma prognosis and life expectancy.
Knowing prognosis and life expectancy can lead to other important questions about your treatment options and the goal of treatment. However, not every patient feels this information will benefit them and they decide to not ask about survival rates or personal prognosis.
Some other questions to consider asking of your doctor:
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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