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Lung cancer patients fight societal neglect

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http://www.sacbee.com/content/women/sto ... 6863c.html

By Dorsey Griffith -- Bee Medical Writer

Published 2:15 am PST Monday, December 5, 2005

Story appeared on Page A1 of The Bee

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In the world of disease awareness, advocacy and research funding, there are the "haves" and the "have-nots."

Breast cancer, for example, is a "have," with celebrity sponsorship, corporate philanthropy and scads of research money generated by massive benefit walks, postage stamp sales and the largess of federal government.

Lung cancer, on the other hand, is a "have-not," a disease plagued by stigma, largely neglected by fundraising groups and, by comparison, under-researched by government-sponsored scientists. Activists note that $1,829 in federal funding was spent per lung cancer death, compared with $23,474 per breast cancer death this year.

Lung cancer patients and the loved ones who survive them are working intensely to change the dynamic.

Their message is simple: Lung cancer is the No. 1 cancer killer in the United States, and the disease is on the rise among people - especially women - who have never smoked.

Lung cancer activists are raising their voices - demanding attention from policymakers, calling for a bigger piece of the research funding pie, and trying to crush the craggy-faced Marlboro man image of a typical lung cancer patient.

In recent weeks, California Gov. Arnold Schwarzenegger's office has endured an earful, with protesters complaining that his proclamation recognizing "Lung Cancer Awareness Month" largely ignored the trends, instead focusing on the role of tobacco in promoting lung cancer.

"It should be more appropriately called an anti-smoking proclamation," said Nancy Michener, chairwoman of the California steering committee for the Washington, D.C.-based Lung Cancer Alliance.

Michener asked for the proclamation and suggested language for it. Michener's version states that former smokers and people who have never smoked make up the majority of new lung cancer cases, and it decries the lack of screening and funding for lung cancer research. By contrast, the document published by the Governor's Office emphasizes the role of active smoking in the disease and the state's leadership in efforts to prevent tobacco use.

A spokeswoman for the governor defended the proclamation, saying it was "representative of all the causes of lung cancer" and "the entire population."

Michener, 50, of Pasadena, knows the disease up close, having battled lung cancer for six years. She describes herself as a "never-smoker."

"Like most women, I feared breast cancer," she said. "I never thought 'lung cancer' in a million years. The reality is that lung cancer kills twice as many women as breast cancer does."

Dr. David Gandara, one of the nation's leading lung cancer specialists and associate director for Clinical Research at the UC Davis Cancer Center, calls the trends "the changing face of lung cancer."

His center has taken on numerous lung cancer research projects, such as the laboratory study of tumor types and clinical trials of novel drug therapies that better target individual cancers.

Gandara concedes that about 80 percent of people who get lung cancer in the United States have a history of smoking, "but in my clinic, over one-third are what we call never-smokers, which means they have smoked less than 100 cigarettes in their lifetime."

Increasingly, those patients are women, he said.

"Twenty years ago, the typical patient was an older man who had a smoking history," he said. "It was 80 percent men and 20 percent women. Now, it's 60 percent men and 40 percent women."

The types of tumors are changing, too. While earlier cases of the disease primarily were squamous cell carcinomas, increasingly doctors are diagnosing bronchioloalveolar carcinoma (BAC), particularly in younger, nonsmoking women. BAC victims have been shown to have a genetic predisposition to the disease, though the cause is still a mystery.

Mimi Arfin, 48, is petite and trim with a broad smile and lively eyes. She also is one of the growing number of women with BAC. Scans taken after she began experiencing shoulder and back pain in March confirmed the diagnosis of advanced lung cancer.

Today, Arfin is part of a UC Davis clinical trial that began with 12 weeks of chemotherapy and continues with weekly intravenous infusions of Erbitux, one of a newer class of cancer therapies approved to fight colorectal cancer that also shows potential effects against lung cancer.

Even though important advances in lung cancer treatment are being made, the diagnosis remains devastating for most.

"The vast majority of patients we see with lung cancer will die of their disease," said Dr. Angela Davies, a medical oncologist at UC Davis. "It's very hard to come to terms with why this happens."

Unlike breast cancer, which has a five-year survival rate of 87 percent, only 15 percent of lung cancer patients will be diagnosed early enough to survive for five years or more, according to the American Cancer Society.

Arfin, an attorney on leave from her job as director of alternative dispute resolution for the federal court system in San Francisco, is married and has two daughters, ages 5 and 7.

"When we told our kids (about the lung cancer), my 5-year-old said, 'Mommy, how did you get it?' I said, 'We don't know. And second, it's not contagious. You can kiss people with lung cancer.' She was greatly relieved."

Davies said a large part of the problem is that lung cancer is rarely detected early. Unlike breast cancer, which can be found at early stages through routine mammography, there is no agreement on the best way to screen for lung cancer.

"The American Cancer Society has no screening guidelines for lung cancer," Davies said. "They don't recommend chest X-rays or CT scans."

Carol Sill, 62, was diagnosed with advanced lung cancer one year ago; today, she promotes more frequent use of CT scans as a way to catch and treat the disease earlier.

An X-ray had confirmed the Natomas woman had a bronchial infection, but her radiologist saw something else and suggested a CT scan, which found tumors in her lung and adrenal gland.

Gandara, of UC Davis, said that while CT scans may be able to diagnose some patients earlier, studies have not confirmed that they lead to better survival rates.

Nevertheless, Sill believes doctors should discuss the option with any patient at risk. Sill, for example, hadn't smoked for two years before her diagnosis, but the wiry and vivacious businesswoman had a 20-year history of smoking.

"Until we can increase awareness for early detection, we are not going to change the lung cancer rates," she said. "Fifteen years from now, I would hope the survival rate is going to be 80 to 95 percent."

Until then, Sill is relying on a positive attitude and the support she gets through the lung cancer survivor group she established at the UC Davis Cancer Center. The group draws patients from as far away as Palo Alto.

Every member of the group gets a handmade ribbon edged in purple to pin on their lapel.

"The ribbon is clear because it's a silent disease," Sill said. "No one really wants to know about it."

About the writer:

The Bee's Dorsey Griffith can be reached at (916) 321-1089 or dgriffith@sacbee.com.

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