Mill Valley, Calif. (PRWEB) November 30, 2012
The nonprofit Sarcoma Alliance was well-represented this month at the world's largest conference on the rare cancer of connective tissue.
In addition to its executive director, four board members paid their way to the annual meeting of the Connective Tissue Oncology Society in Prague, said board member Suzie Siegel of Tampa, a leiomyosarcoma survivor.
About 750 physicians and scientists attended, the most ever, said CTOS President Jay Wunder, surgeon-in-chief at the University of Toronto. The number doesn't include spouses and other guests who didn't attend the sessions.
“We’re seeing lots of new animal studies, new markers. It’s all getting us closer to new treatments," said Wunder, an orthopedic surgeon.
"What we need is more clinical trials to test them,” said medical oncologist Scott Schuetze, director of the Connective Tissue Oncology Program and medical director of the Clinical Trials Office at the University of Michigan Comprehensive Cancer Center in Ann Arbor. Michigan hosts the Sarcoma Alliance for Research through Collaboration, which helps doctors in different institutions cooperate on clinical trials.
“A bunch of us sat together and said, ‘It’s not about us. We need a collaboration on neutral ground,'" said SARC co-founder George Demetri, a medical oncologist who directs the Center for Sarcoma and Bone Oncology at the Dana-Farber Cancer Institute in Boston.
Michael Leahy, a consultant medical oncologist for the Greater Manchester and Oswestry Sarcoma Service at The Christie in England, said he sees more cooperation and less deference to “key opinion leaders.”
"This particular year, this particular meeting, we’re moving away from the individual physician being in charge of everything to more networks with a more collegial approach in determining better treatment," he said. "It’s medicine growing up, isn’t it?”
Despite the cooperation, one difference seems clear: On average, U.S. doctors give more chemotherapy to sarcoma patients than do their European colleagues, and those in northern Europe give more than those in southern Europe, said Jean-Yves Blay, head of the Medical Oncology Department at the Centre Leon Berard in Lyon, France. He also is the director of Conticanet, a network funded by the European Union and dedicated to new treatment approaches in sarcomas.
In Europe, there is more pressure to reduce costs, Blay said. This is related to how health-care systems reimburse doctors and hospitals, said medical oncologist Shreyaskumar Patel, medical director of the Sarcoma Center at M.D. Anderson Cancer Center in Houston. Under capitation, for example, a doctor would get a set amount for treating a patient, and would have to work within that budget.
“In the U.S., it’s easier to get things paid for,” said medical oncologist Lee Helman, head of the Molecular Oncology Section of the Pediatric Oncology Branch of the National Cancer Institute in Bethesda, Md. In general, he said, health-care systems in Europe require more proof that a treatment works before paying for it.
But clinical trials, which might provide that proof, have a harder time enrolling patients with rare cancers like sarcoma, as opposed to common cancers, said Paolo G. Casali, a medical oncologist who heads the Adult Sarcoma Medical Oncology Unit at the Istituto Nazionale Tumori in Milan, Italy. He coordinates the European Action Against Rare Cancers for the European Society for Medical Oncology.
Regulators should accept a higher degree of uncertainty with rare cancers, just as “we share this uncertainty with our patients at the bedside,” he said.
European doctors are more willing to stop treatment, Leahy said. "We do have a much more conservative approach in Europe, and England certainly. I always feel like I’m walking a tightrope between over-treatment and under-treatment. You don’t want to be nihilistic, but you don’t want to give false hope either."
European patients don't seem to demand as much treatment, said medical oncologist Sant Chawla, director of the Sarcoma Oncology Center in Santa Monica, Calif.
“If they’re 80 years old and have had a heart attack, stroke, etc., we shouldn’t be giving them chemo. They’ve lived their life." But others can be cured, he said, or get more years.
“We need to shoot for the stars,” he said.
“I fail all the time, but if you don’t try, you’ll never succeed,” said Bob Benjamin, chair of the Department of Sarcoma Medical Oncology at M.D. Anderson. CTOS gave him its Herman Suit Award, and he talked about how he has learned from his patients.
"As a patient advocate, I sometimes hear from people who think doctors are just in it for the money, or they already have the cure for cancer but are keeping it secret so that they don't lose their jobs," Siegel said. "I wish they could see how much these doctors care about their patients."
Sarcoma can arise anywhere in the body at any age, from newborn on up. The argument over how much treatment is too much applies more to adults, Helman said. "Pediatric sarcomas, in general, are more responsive to chemo. You’ll try anything for a kid.”
Pathologist Stefano Sioletic, a pathologist who researches the c-jun oncogene in liposarcoma under Demetri, has gone to other conferences on cancer research.
“I don’t get any stimulus from them, and they don’t care what I do,” he said. At CTOS, “I know I won’t get a question like, ‘What is liposarcoma?’ You find out what people are doing around the world.”
There are more than 50 subtypes of sarcoma, which can occur in bone and soft tissue, such as muscle, nerve and fat tissue. For more information on CTOS, go to http://www.ctos.org/. The Sarcoma Alliance, based in Mill Valley, Calif., provides guidance, education and support to people affected by sarcoma. Its website is http://sarcomaalliance.org.