Leading the fight against rare cancer

Michael Torrey with his wife, Cheryl, and two daughters, Allie and Kayla. Torrey found out that he had a form of cancer so rare, he had to conduct his own research and determine what treatment protocol was right for him.

A Malibu resident and others around the nation strive to bring attention to and find a cure for a rare form of cancer.

By Melonie Magruder / Special to The Malibu Times

Forty-nine-year-old Malibu resident Michael Torrey designs and builds custom homes. He has two young daughters, a devoted wife and a thriving business. But his pleasant life cracked open three years ago when, while on a job site, he started seeing double.

“I thought maybe I was just tired since I was in great health,” Torrey said. “But I could barely get home that day. I sensed this was a change I never expected.”

An MRI revealed a clival chordoma-a growth on the brain stem of which the proximity to the carotid artery and cranial nerves usually makes it impossible to operate.

Chordoma is an even rarer subset of a rare form of cancer called sarcoma, frequently dubbed “the forgotten cancer.” There are more than 50 types of sarcomas, with the only one generally mentioned in public health forums being Kaposi’s sarcoma, seen primarily in people suffering from AIDS.

Torrey was somewhat lucky in that doctors were able to operate on him.

“I had three surgeries to remove all of the growth and then underwent 38 radiation treatments,” Torrey said. “It took every ounce of energy I had.”

Torrey is cancer-free now, but he said the biggest problem in treatment was finding cancer centers and specialists with established protocols to control the disease.

“Because of the lack of research, there was a basic question of is it a cancer or not?” he said.

Torrey quickly realized that few research dollars had gone to sarcoma studies and he started intense Internet searches for information, networks and doctors to treat his disease. Like most other chordoma patients, he found that he would be responsible for doing the research and determining what treatment protocol was right for him.

One of those patients was Liddy Shriver, whose parents watched her struggle with sarcoma for seven years before she succumbed to the disease in January of 2004.

“We launched the Liddy Shriver Sarcoma Initiative on Liddy’s birthday, the November before she died,” Bruce Shriver, Liddy’s father, said. “It links up with sarcoma sites, medical centers, clinical trials and support groups around the world. We’ve got an international medical advisory board and we also send out monthly e-newsletters. We have to do the work to raise awareness of this disease, since it doesn’t get the attention it needs from the federal research centers.”

Shriver, who lives in Ossining, N.Y., said although sarcomas represent only 1 percent of adult cancers, they comprise 20 percent of adolescent cancers and that 10,000 new cases of sarcoma are diagnosed each year. “The real story is that hundreds of thousands of people face this disease worldwide each year,” he said. “We have got to raise awareness about sarcoma on a global level.”

Accordingly, Shriver launched the International Sarcoma Awareness Week, scheduled July 14-22. “We have 50 teams participating in over 60 coordinated programs in 13 countries around the world,” he said. “Events range from a bike ride in Vermont to a Beach Walk in San Clemente to a series of opera recitals conducted by Maestro Vincent La Selva in New York City.”

The Liddy Shriver Sarcoma Initiative has funded 12 different research projects around the country. “Because of cutbacks in federal funding the last few years, rare cancers must rely heavily on private donations,” Shriver said.

Some patients are even doing their own lab research. Josh Sommer of North Carolina was a freshman studying environmental engineering at Duke University when profound headaches sent him to the doctor.

“He had an MRI on Jan. 9 last year and then went back to classes,” his mother, Simone Sommer, said. “The hardest thing I’ve ever had to do was tell him that he had a tumor.”

Simone Sommer is a family practice doctor but quickly found that the research on Josh’s chordoma diagnosis was scant. “I traveled around the country researching treatment options,” Sommer said. “There wasn’t a lot to be found.”

Josh ended up opting for “minimally invasive” endoscopic surgery to treat his chordoma. “We went in through the nose,” he said.

The surgery was successful and Josh was spurred to change his major to pre-med.

“I was fortunate enough that one of the top research scientists on chordoma happens to work at Duke,” Josh said. “Dr. Michael Kelly used to be at the National Cancer Institute and I volunteered to work in his lab.”

Like Shriver and Torrey, the Sommers are taking a pro-active stance in the fight against a disease that seems to be less and less rare.

“One of the best ways we can help people suffering from this disease is to cheer their own self-motivation to seek treatment options,” Simone Sommer said.

“So Josh is now working night and day to find the cure for his own disease,” his mother said. “Meanwhile, we incorporated as the Chordoma Foundation in February and have already staged our first international study conference.”

And Torrey is continuing his work to raise awareness about sarcoma.

“I’m heading to Vermont to bike in the Team Sarcoma event there as part of the Sarcoma Awareness week,” Torrey said. “With this kind of awareness, we can coordinate research and raise the success rates for treatment. But it’s coming one patient at a time.”

More information about the Liddy Shriver Sarcoma Initiative can be found online at www.liddyshriversarcomainitiative.org, and about chordoma at www.chordomafoundation.org