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http://www.ecnnews.com/cgi-bin/15/etsto ... 0060327-fn

Not for smokers only: Local woman works to eradicate lung cancer stereotypes; pushes for action

Let's get it out of the way right now: Diane Legg does not smoke. She smoked socially in college but does not have the "pack history" that would have put her at risk for lung cancer.

Let's get it out of the way, because that's what everybody wants to know when they find out a person has lung cancer. And maybe it shouldn't be, said the 43-year-old mother from Amesbury.

The stigma attached to lung cancer is one of the reasons survival rates for nonsmokers like Legg, and like Dana Reeve, wife of the late actor Christopher Reeve, are so dismal. Dana Reeve died this month at age 44 of lung cancer, only seven months after her diagnosis.

Legg was one of the few whose cancer was detected in an early stage. Seventy percent of lung cancers are detected in late stage, which is one of the reasons only 15 percent of victims survive five years after diagnosis. Breast cancer, in contrast, has an 88 percent five-year survival rate. Prostate cancer's rate is 99 percent.

"In my opinion, a lot of the lack of action around this disease is because there's a stigma to it," Legg said. "And the stigma is the fact that people think this is a self-inflicted disease, because if they smoke, then they deserved it. That is just absolutely ridiculous. I mean if someone dies of a heart attack, people don't ask, 'Did you smoke?'"

Legg is among a small group of activists starting a Massachusetts chapter of the Lung Cancer Alliance, an advocacy group trying to erase the stigma and attract research money to make lung cancer less fatal. She hopes the national shock over Dana Reeve's death will bring attention to how deadly lung cancer still is.

"I definitely think that Dana Reeve has made people take notice of this disease because Dana Reeve is a nonsmoker and also because the way she lived her life," Legg said. "She was an extraordinary person. It sort of propelled this to the forefront."

Legg might not have survived lung cancer if she hadn't pulled a muscle picking up her third son, Will, from his crib in August 2004.

A doctor ordered a CT scan at Anna Jaques Hospital as a precaution. The doctor who reviewed the scan noticed a nodule on her left lung.

Legg was in disbelief because a friend of hers, a 44-year-old nonsmoker with three children, had just been diagnosed with lung cancer that spring. Two pulmonary experts assured Legg she didn't have cancer. She had no risk factors. Yet a month of antibiotics didn't shrink the nodule, so she had a biopsy.

A doctor called with the results on a Monday night around 9 p.m.

"We were watching the Red Sox in the World Series and he told me that he was going to be heading out on vacation but he wanted to give me the results of the test," Legg said. "He said, 'By the way, is (your husband) Dave home?' And I said yes. And he said, 'Well he has to get on the phone because what I have to tell you is not good.' So that was how we found out that, in fact, I did have lung cancer."

Legg has a type of lung cancer called adenocarcinoma of the lung. It is the most common form of lung cancer and most people who get it are smokers, but it is also the most common lung cancer among nonsmoking women and patients under age 45.

Only about 10 percent to 15 percent of people diagnosed with lung cancer are nonsmokers — people who have smoked fewer than 100 cigarettes in their lifetime. But because the total number of diagnoses is so high, that still adds up to 17,000 or more people a year, said Dr. Pasi Janne, assistant professor of medicine at Dana-Farber Cancer Institute in Boston. More than half of lung cancer diagnoses are to former smokers who quit.

"I think the stigma that's associated with lung cancer is that you did it to yourself," Janne said. "Nobody deserves to get cancer, whether you're a smoker or not."

Within two weeks of her diagnosis, Legg had surgery to remove the upper left lobe of her lung. In early 2005 she started the first of four rounds of chemotherapy.

As she finished her second round, her friend who had lung cancer died.

"It was hard for me to accept the unfairness of this disease, is the best way to put it," she said. "The disease is unfair."

Lung cancer has no symptoms until the late stage of the disease, when the cancer has spread. By that time the prognosis is grim.

There is no screening test for lung cancer, so early diagnoses typically occur in people who have an X-ray for something else, Janne said.

Legg and the Lung Cancer Alliance are advocating for more research and funding for screening tests. A CT scan, like the one that first picked up Legg's cancer, isn't covered by insurance companies for people who have no symptoms. One of the reasons is there are a lot of false positives; the scan detects cancer, but it also picks up other things that look like cancer and turn out to be harmless.

Janne said he is hopeful that basic research into lung cancer could help with early detection and treatments.

The latest studies show there is a biological difference between smokers' lung cancers and those developed by young nonsmokers, mostly women. That has already helped doctors choose particular drugs that tend to work well against the second type.

Legg's treatment did work well. It has been almost a year and a half since her diagnosis and she feels almost the same as she did before.

Because she is one of the few who survived the disease, she is determined to speak out on behalf of those who can't.

One of her main goals with the Lung Cancer Alliance is to fight the stigma of lung cancer, even for those like ABC news anchor Peter Jennings, who smoked for much of his adult life. Jennings quit smoking for 20 years but started again after 9/11. He died in August, five months after his diagnosis.

"A lot of people that do have lung cancer do blame themselves if they have been smokers in the past, and I think they're embarrassed and they're ashamed that they smoked and didn't stop sooner or couldn't stop," Legg said. "The thing is, smoking is an addiction and lung cancer is a disease. There should be no stigma around this."


Lung cancer's toll

r More people die from lung cancer than from any other type of cancer.

r In 2002, the most recent statistics, more people died from lung cancer than from breast, prostate and colon cancer combined.

r More than 180,000 people were diagnosed with lung cancer in 2002. More than 157,000 died.

r Lung cancer is the second leading cause of death in men, behind heart disease, and the third cause of death in women, behind heart disease and stroke.

r Smoking and exposure to cigarette smoke are the main risk factors for lung cancer. People who smoke are 10 to 20 times more likely to get lung cancer or die from lung cancer than people who do not smoke.

r About 10 percent of lung cancer deaths in men and about 20 percent in women are not due to smoking. Other risk factors include exposure to radon or asbestos, and family history.

Source: U.S. Centers for Disease Control and Prevention.


Dana Reeve's battle

Dana Reeve cared for her husband, "Superman" star Christopher Reeve, for nine years after a horseback riding accident paralyzed him in 1995. She took over the foundation set up in his name after his death in 2004 and continued to fight for a cure for spinal cord injuries.

But less than a year later, Reeve had to make her own health a priority. She announced to the public Aug. 9 that she had lung cancer, just two days after ABC news anchor Peter Jennings died of the disease.

Reeve did not smoke and was only 44 years old.

When she announced her diagnosis, she told reporters, "Now, more than ever, I feel Chris with me as I face this challenge. As always, I look to him as the ultimate example of defying the odds with strength, courage and hope in the face of life's adversities."

Reeve was optimistic about her prognosis and by all accounts looked healthy when she performed at a Jan. 12 ceremony honoring her friend and hockey star Mark Messier.

So it was a shock to many when she died March 7 at Memorial Sloan-Kettering Medical Center.

She left a 13-year-old son, who has now lost both of his parents within 18 months.

Lung cancer activists hope Dana Reeve's death will bring public attention to the disease and remind people that thousands of nonsmokers are diagnosed with lung cancer each year. — Julie Kirkwood

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Good article Randy. I can tell you from personal experience that when I go in for a test, or see a new doc and they take my health info, someone will almost always ask if I smoke(d). When I say no, they just go out of their way to be nice to me, pamper me. I always wonder....are they also that kind to the smokers?

On the other hand, while most smokers comply with no smoking signs, I do encountered a few rude students who insist on smoking immediately outside my office doorway even though it is posted, per campus policy, no-smoking within 25 feet of the building. I often get the obscene gesture, called names when I ask them to move, or they try to argue they weren't smoking with cig in hand. So I can understand how anyone who has encountered a rude smoker might lack concern for lc.

Have you noticed that movies are now showing smokers ignoring "no smoking" signs and making rude comments to non-smokers when asked to put it out. I'm sure this new display of smoker attitude in the movies is driven by the cigarette industry, afraid that sales will drop as more and more smoking restrictions are established.

This does not help our cause either.

Bottom line is that smokers and non-smokers get lc. No body deserves it, and we need more $$ for research.



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Deb and I were both smokers until March 29 2003. That daywe were told My wife had LC. We walked out of the office and threw all of them away and have not hade a craving since then. Deb passed on 1/23/2006. I live in the heart of tobacco land. I can drive to all the HQs in 30 minutes from where I live. Debs drs. were alwways very kind to us about the smoking issue. We never got the "attitude" tat you spoke of. Most of those students you spoke of will eventually quit. We did.

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