Monday, December 19, 2011

U.S. Rep. Kathy Castor gives us a holiday gift

By Suzie Siegel, board member

U.S. Rep. Kathy Castor, D-Fla., told the Sarcoma Alliance that she will introduce a resolution in January to name July as Sarcoma Awareness Month.

“Sarcoma touches the lives of thousands of people throughout the United States each year, but unfortunately, many people do not even know about this devastating form of cancer," Castor says. "I hope that by designating July as Sarcoma Awareness Month we bring more attention to this disease and continue working to find a cure.”

She's my representative, and I had asked if it would be possible to get the ball rolling before July to give advocates time to prepare events. With a Congressional resolution, it would be easier to get sarcoma added to calendars and other lists by organizations, institutions and the media.

Suzanne Leider, the founder of the Alliance, had proposed a Sarcoma Awareness Week for June 10-16 in 2001. CancerSource and collaborated on an event. Eventually, the week expanded to a month. Other nonprofits, such as the Sarcoma Foundation of America and Sarcoma-UK, and sarcoma centers, such as the Huntsman Cancer Center in Salt Lake City and Moffitt Cancer Center in Tampa, also adopted June as a time to raise awareness.

Meanwhile, Bruce Shriver of the Liddy Shriver Sarcoma Initiative started an International Sarcoma Awareness Week in July.

In 2006, I began asking nonprofits why we couldn't pick one month that we could all recognize. Because Bruce would not budge from July, the Alliance and others agreed to go with July as Sarcoma Awareness Month in 2007.

Now, I don't know anyone in the field who disagrees with July.

I asked Rep. Castor if she would introduce a resolution because she co-founded the bipartisan Children's Health Care Caucus. Although sarcoma represents 1 percent of cancers in adults, it's 15 percent of those in children. The National Cancer Institute reports 13,800 people were diagnosed this year.

"The number keeps going up," says Alliance President Joan Darling. Nevertheless, the figures may be low because the government often lumps sarcomas with carcinomas. For example, she says, it tracks Kaposi's sarcoma, which is linked to AIDS, but sarcoma that starts in the breast is grouped with more common types of breast cancer. In contrast, the American Cancer Society separates the different subtypes of sarcoma in children, which makes it harder to see the impact of sarcoma on young lives.

Her daughter was diagnosed with an abscessed cyst at age 13. After surgery, the pathology report revealed alveolar rhabdomyosarcoma. "Her pediatrician had never seen sarcoma before." A correct diagnosis is vital to treatment, Darling says, and her daughter did get the help she needed.

"Proper treatment doesn't just help patients. It also saves taxpayers," she says. "Why waste millions on less-effective or more toxic treatment?"

In his years at Memorial Sloan-Kettering Cancer Center in New York, renowned researcher Robert Maki estimates 10 to 15 percent of the patients who had been diagnosed elsewhere had at least a minor change to their diagnosis when Sloan tested their tumor. This year, Maki, MD, PhD, became chief of the Pediatric Hematology/Oncology Division and medical director of the Sarcoma Cancer Program at Mount Sinai Medical Center in New York.

Many sarcoma patients have never heard of anyone else with their cancer. Their doctors may not know all the treatment options or that sarcoma nonprofits exist. Doctors may not refer patients to oncologists who specialize in sarcoma.

Dr. Maki contrasts sarcoma awareness with awareness of breast cancer: A person can have a 10-centimeter lump on his leg and not suspect cancer. “But if a woman has a small lump in her breast, boom, it’s out,” he says, snapping his fingers.

Unlike more common cancers, sarcoma has had few champions because it's rare and aggressive, says Joni Freedman of Palm Harbor, Fla., who was thrilled to hear the news about Rep. Castor.

"It gives us all hope. It was time for someone of her stature to recognize the thousands of us out there who have never had a voice before," says Freedman, who helped manage the sarcoma mailing list on the Association of Cancer Online Resources. The longtime advocate has survived 15 years with fibrosarcoma, but the cancer has now spread to bones throughout her body.

Dan Schultz of Bryn Mawr, Penn., contacted the Sarcoma Alliance last July, offering to help get recognition for Sarcoma Awareness Month. His doctors had found sarcoma throughout his body; it's considered undifferentiated because it does not fit into one of the more than 50 subtypes of sarcoma. He has undergone grueling chemotherapy, but his options are limited due to the current shortage of Doxil.

The photo shows Dan surrounded by his daughter, Madelyn, in goggles and his triplets: Sadie in the green PJs, Avery in red, and Quinn in blue.

Schultz hopes people will ask their U.S. representatives to support Rep. Castor's resolution. (In the top right of this page is a way to search for representatives by ZIP code.)

"In a time of so many challenges in Washington, give thanks this holiday season for efforts by Congress to come together for a great cause," he says. "This resolution, if passed, would heighten awareness of sarcoma in a community without strength in numbers due to the rarity of the disease."

I put out a news release on this subject if anyone would like to see that.

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