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 Sarcoma.net 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.

Tips for supporting cancer patients online

Telling cancer patients to fight, pray or stay positive can hurt more than help.

“Don’t offer advice unless someone asks for it,” says Margaret Price, a social worker at the Moffitt Cancer Center in Tampa. She has run cancer support groups for 15 years.

“You’re welcome to say what helped you,” she says. “But if you tell people what they should do, they may feel that you don’t want to hear about their doubts, fears, anger or despair.”

“Some people may blame themselves if their cancer comes back and spreads,” says psychologist Karen Milo (in the photo). “They may think they didn’t pray hard enough, fight hard enough or stay positive.” She worked at Moffitt and continues to see cancer patients in her private practice.

Members of the Sarcoma Alliance have helped create support groups for sarcoma patients. Because sarcoma is a rare cancer, however, it can be hard to get enough people in the same place at the same time. That’s why the Alliance also offers online support: a Facebook page, discussion board, peer-to-peer network, live chat room, YouTube channel and this blog.

In an in-person support group, a trained facilitator can lay down ground rules and gently steer the conversation if it takes an unhelpful turn. Because online support rarely has that much guidance, we've developed the following suggestions, in consultation with Price, Milo and other professionals:

-- Feel free to talk about how your beliefs have helped you, but don’t assume your beliefs will comfort others. For example, Price says, you might say how prayer helped you or welcome prayers from others, but don’t tell them that they need to pray or keep the faith. That can silence those who are not religious or those who want to talk about fears and doubts.

-- Beware the “tyranny of positive thinking,” writes psychiatrist Jimmie C. Holland in her book “The Human Side of Cancer.” It’s great if people can enjoy life despite their diagnosis and treatment. But telling people they need to stay positive, or that a positive attitude will help them survive, can keep them from expressing “negative” emotions. That’s not healthy, writes Holland, who pioneered psychosocial treatment for cancer patients.

“Research shows that a positive attitude doesn’t actually help cancer patients live longer,” Price says.

-- Think twice before comparing cancer to war. This metaphor has been around for a long time, and it works for some, but not others, says Price, who spoke on the topic at a Moffitt conference this year. Some people prefer to work on healing and acceptance in their cancer journey. If cancer is a fight, then it will have winners and losers. People may feel defeated if their cancer advances, she says, with little interest in hospice or other help for the time they have left.

“The rest of a patient’s life is often disregarded or put on hold because all resources must be marshaled for the war effort,” she says. “This intense focus may serve as a barrier to alternate understandings of one’s life in the context of profound illness.”

Patients have a right to decide when they want to stop a particular treatment or all treatment. This doesn’t make them any less courageous, she adds.

-- Don’t give medical advice. You can discuss your own experiences and interests, but remember that cases are different. This is especially true for a rare cancer like sarcoma. The chemo that worked for you may not be appropriate for someone else, for instance.

-- Don’t make a major change in your diet or take supplements without consulting your physician. Raw fruits and vegetables can be risky for chemo patients with low white-cell counts, for example. Like conventional medicine, herbs can have side effects. Social worker Tom May, program director for the Cancer Support Community-Redondo Beach in Los Angeles County, says he often hears people tell others that they can cure themselves if only they take X or eat Y.

-- Don’t monopolize conversations.

-- Avoid partisan politics.

-- Keep in mind that it’s easier to misunderstand someone online than in person.

-- Try not to be alarmed at the experiences of others. Support groups tend to attract the newly diagnosed, those with advancing disease, and those with physical impairments. You're less likely to meet people who were treated years ago, whose cancer has not returned, and who can still do whatever they did before their diagnosis.

Register for telephone workshop on treatment updates

Cancer Care will hold a free workshop on the latest treatments for sarcoma Thursday from 1:30 to 2:30 Eastern time. Speakers include Dr. George Demetri, Harvard; Dr. Jeffrey Wayne, Northwestern; Dr. Tom DeLaney, Massachusetts General Hospital; and Cancer Care Director Carolyn Messner.

Register online or call 1-800-813-4773. You can hear this workshop on the phone or an online webcast. If you are not able to participate, the workshop will be available later by calling 1-888-337-7533 or going online. For more information, visit Cancer Care's website.