Finding the Right Mesothelioma Specialist Can Make All the Difference
LAS VEGAS — After two days of lectures, presentations and panel discussions last week among scientists, surgeons, oncologists and advocates at the 10th annual Meso Foundation Symposium, one simple conclusion emerged:
Now more than ever, the most critical decision a newly diagnosed mesothelioma patient can make, is finding the right medical team, and the right treatment center to handle the care.
It could be the difference between life and death.
“We need to focus on getting these patients to the specialty centers. It could make all the difference,” said Joseph Friedberg, M.D., chief of thoracic surgery at the Abramson Cancer Center in Philadelphia. “It’s such a rare disease, that there aren’t a lot of pockets of expertise, but that’s where they (patients) need to be.”
As the experts continue unraveling the intricacies of this complex cancer — particularly through recent genetic breakthroughs — novel therapies are beginning to emerge, moving mesothelioma away from its death-sentence past and into its more-treatable future.
The Future is Now
“This is an exciting time,” said renowned mesothelioma researcher Michele Carbone, M.D., Ph.D., director of the Hawaii Cancer Center. “We’re learning more how to personalize the medicine, and it’s getting better. Every case will be treated differently.”
Friedberg and Carbone echoed the sentiments of many of the experts at the symposium, which also included several mesothelioma patients who have passed the six-year survival mark, or expect to be passing it in the future. Some of them have lived more than 10 years with the cancer.
Almost all of the survivors spoke of the need to be aggressive in their approach to treatment, and often their good fortune of being guided to a top-level medical team.
“Put egos aside. Just because a surgeon says ‘I can,’ doesn’t mean he should (be doing the surgery). Often, he should refer the patient elsewhere, and same with the medical oncologist,” Friedberg said. “Like anything else, the more you do it (mesothelioma surgery), the better you get at it. It’s so important with this disease.”
Sharing the stage with Friedberg and Carbone during one session was Hedy Kindler, M.D., director of the University of Chicago Mesothelioma Program. She also talked about the need for patients to seek out the big center clinical trials, where the latest therapies are being tested; often successfully for a number of patients.
“It’s the way we learn even more about the disease and how to treat it, where we can help current patients and hopefully help patients in the future,” Kindler said. “There are many new drugs out there now. An expert who does a lot of clinical trials can triage you to see what trial is right for you.”
Find an Expert
Mary Hesdorffer, executive director of the Mesothelioma Applied Research Foundation, also encouraged newly diagnosed patients several times during the symposium to take advantage of the recent treatment advances that the experts have been testing.
“Experience is so important. You don’t want to be met with excitement from the surgeon. You want to be met with experience,” Hesdorffer said. “There are not many (oncologists) dedicated to this disease. You want one that is. You want a partner. If you meet with a specialist, they will help come up with a plan for you.”
Despite the need to find experience, even the most experienced in the medical field admit they don’t have all the answers. An estimated 3,000 Americans each year are diagnosed with mesothelioma, and many do not live more than a year or two.
“If the doctors here could predict what is going to happen, we’d be in Las Vegas all the time,” said David Ettinger, M.D., professor of oncology at the Johns Hopkins School of Medicine in Baltimore. “No one has all the answers.”
Ettinger, who completed his medical oncology training in 1975, used the occasion to take a jab at the new, impersonal approach to medicine that often sacrifices the old school personal approach. It drew considerable laughter from the audience.
“It’s possible for a patient to walk into the office today with a knife sticking through his head, and the doctor not even see it because he’s not looking up. He’s typing in his notes,” Ettinger said. “We have to remember there is a fourth member of his multidisciplinary approach, and that’s the patient.”
Friedberg also used the occasion to reopen the still ongoing debate over whether a surgical patient is better served by having the extrapleural pneumonectomy (EPP), which involves removing an entire lung, or the lung-sparing pleurectomy/decortication (P/D).
He is a strong advocate for the P/D surgery, which is more detailed but less radical, and has been met with better results at the Abramson Cancer Center. Other surgeons, at big centers in Boston and New York, still do the EPP.
“My conversation (with patients) is that surgery for mesothelioma remains investigational,” he said. “There are other options. There still is not one totally accepted approach. We’ve had better results [and] preserved quality of life, by sparing the lung. We believe in our approach. Surgery in itself is the biggest decision a patient ever is going to make.”
And the opportunity to elect surgery is a gift afforded to those who catch the cancer in an early stage. This is why asbestos disease screenings are so highly recommended to anyone with an occupational history of asbestos exposure.