Campaign Underway to Declare July as Sarcoma Awareness Month

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Recognition by Congress would raise the visibility of a rare cancer that is “frequently misdiagnosed and highly underreported.” The Sarcoma Alliance and Sarcoma Foundation of America have banded together with other nonprofit organizations to help inform patients and health-care providers.

“Unfortunately, almost one out of every three children diagnosed with sarcoma will not survive,” says Sarcoma Alliance President Joan Darling. “That's why it's important to raise awareness of sarcoma.”

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July is Sarcoma Awareness Month, and nonprofit groups that fund research or help patients with this rare cancer have planned everything from stand-up paddleboard races in Hawaii to a mountain trail ride in Virginia.

"Many sarcoma patients have never heard of anyone with their cancer. They think they’re all alone,” says Suzie Siegel, a board member of the Sarcoma Alliance in Mill Valley, Calif. “They—and their health-care providers—may not know all of the options or that nonprofit groups can help.”

In 2007, a coalition of sarcoma nonprofit groups agreed on July as Sarcoma Awareness Month. Siegel, who has been in remission from metastatic leiomyosarcoma for five years, started a campaign to get a House resolution passed. On the Web site for the Alliance, she asks people to contact their U.S. representatives.

“The clock is ticking for me,” says Siegel, who lives in Tampa. “I hope Congress acts before I die.”

Sarcoma occurs in connective tissues, such as muscle, cartilage, fat, bone and blood vessels, and it can arise anywhere in the body. More than 50 subtypes have been identified. About 11,000 Americans are diagnosed with sarcoma each year, and each year, 5,000 die from it. It represents 1 percent of all cancers diagnosed in adults, and 15 percent of all children’s cancers.

The daughter of Sarcoma Alliance President Joan Darling was diagnosed with alveolar rhabdomyosarcoma.

“She was 13 at the time, and endured a difficult year of treatment that entailed 12 rounds of chemotherapy, with a total of six chemo agents; 28 radiation treatments; and five operations. I'm happy to say this month she's turning 27, is married and working as an attorney, but she'll live with the serious side effects of that treatment all her life.

“Unfortunately, almost one out of every three children diagnosed with sarcoma will not survive,” says Darling, who lives in Lincoln, Neb. “That's why it's important to raise awareness of sarcoma.”

"We in the sarcoma community are proud of significant achievement, especially in the pediatric sarcomas, but look forward to all working as one team to make even greater strides," says Dr. Laurence Baker of the University of Michigan in Ann Arbor. He is board chairman of SARC, a consortium of doctors who collaborate on sarcoma research.

Mike Mandell, who lives in Plantation, Fla., is on the board of the Sarcoma Foundation of America in Damascus, Md. He has been in remission from angiosarcoma for five years. “It was not correctly diagnosed until my fourth [medical] opinion.

“Due to sarcoma’s rarity, it’s so vital to be seen by a sarcoma specialist to get the optimal, most up-to-date treatment,” he says.

The Sarcoma Alliance gives travel grants to patients who can’t afford a second opinion. It has a blog, a discussion board, a live chat room, and a peer-to-peer network. Its sister organization, the Sarcoma Foundation of America, gives grants to sarcoma researchers and runs a patient registry. Both nonprofit groups work on education and advocacy.

The National Cancer Institute’s 2004 Report of the Sarcoma Progress Review Group recognized that sarcoma is “frequently misdiagnosed and highly underreported.” It states that many patients receive unacceptable care.

“Diagnosis is delayed in many patients by the lack of experience of primary physicians, who often attribute the initial mass to common benign lesions,” says the report, which can be accessed at http://planning.cancer.gov/library/2004sarcoma.pdf

Patients may understand only that they have cancer; they may not know what sarcomas are or that sarcomas often are treated differently from more common cancers. They may not know that sarcoma doctors exist. They may lack the desire, time or money to travel to a large cancer center that has a comprehensive sarcoma program, the report says.

For more information, as well as links to others who support Sarcoma Awareness Month, go to: http://www.sarcomaalliance.org/News/news7.shtml

Media Contacts:

Sarcoma Alliance:
Suzie Siegel, board member
Home: 813-558-9675

Arthur Beckert, executive director
Cell: 415-990-2016
http://www.sarcomaalliance.org/News/news.shtml

Sarcoma Foundation of America:
Matt Alsante, executive director
Office: 301-253-8687
http://www.curesarcoma.org

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