NY Times on breast cancer rates

["Genzer, Peter A" <genzer@BNL.GOV>]

Radsafers,



While not directly related to rad safety, this NY Times analysis of breast

cancer rates and the Long Island Breast Cancer Study does an excellent job

of showing how elected officials and activist groups can seize on a myth and

perpetuate it. 



Peter A. Genzer

Principal Media & Communications Specialist

Brookhaven National Laboratory

Phone: 631 344-3174

Fax: 631 344-3368

E-mail: genzer@bnl.gov

Web: www.bnl.gov



http://www.nytimes.com/2002/08/29/nyregion/29CANC.html



August 29, 2002



On Long Island, Scientists Keep Studying Breast Cancer Rates That Are Not

Unusual

By GINA KOLATA



When scientists announced this month that a widely anticipated federal study

of breast cancer had failed to find links to pollution or other

environmental factors, attention was again focused on the prevalence of the

disease on Long Island, where the study was based.



For years, it has been widely thought that rates of breast cancer on Long

Island are unusually high. But, contrary to popular belief, they are not.

The rates on Long Island are not much different from those of the rest of

the country - and a number of areas in the Northeast and elsewhere have

higher rates.



But the perception of an epidemic has persisted like a suburban legend.

Figures that scientists say have no basis in fact, like a breast cancer rate

that is 30 percent higher than the national average, have been bandied about

at public meetings, and repeated by breast cancer patients, politicians and

newspapers, including The New York Times.



Some news organizations have attributed the figure to the New York State

Department of Health, but a spokeswoman for the department, Kristine A.

Smith, said that the rates on Long Island were never that high and she did

not know where the figure came from.



Dr. Deborah Winn, head of the extramural epidemiology program at the

National Cancer Institute, said: "I don't think it is reflective of any

reality. I don't know where it comes from. It's myths."



It was fears of such an epidemic, and the political uproar that ensued, that

led Congress in 1993 to authorize the nearly $30 million study that has, so

far, failed to find evidence that pollutants are linked to the cancer.



The breast cancer incidence in Suffolk County, in the years 1994 to 1998,

was 118.2 cases per 100,000 women per year and in Nassau County it was

115.6, according to the State Health Department. The rate in the United

States was 114.3 cases per 100,000 women, the National Cancer Institute

said. That means that the breast cancer incidence in Suffolk County was 3.4

percent above the national average, and in Nassau County it was 1.1 percent

higher than the national average.



The lead investigator on the study, Dr. Marilie D. Gammon, an epidemiologist

at the University of North Carolina's School of Public Health, said she

never alluded to a Long Island breast cancer epidemic in applying for the

grant. Writing in her 1994 application, she said that the Long Island rates

from 1987 until 1989 were "generally comparable to the SEER rates,"

referring to national rates reported by the National Cancer Institute in its

Surveillance, Epidemiology, and End Results program. That pattern continues,

with rates that are slightly higher than the national average but typical

for the Northeast.



But that was not the perception of many who who lobbied for the study. Geri

Barish, the president of 1 in 9: The Long Island Breast Cancer Action

Coalition, recalled her first news conference in 1991: "I said, `I have just

come from the Breast Cancer Capital of the World, and that is Long Island.'

"



Barbara Balaban, one of the leaders of the Long Island advocates for the

study, said she and others pushed for it because of what they had noticed on

Long Island. It seemed to them that an extraordinary number of their

neighbors, friends and relatives living in Nassau and Suffolk Counties had

gotten the disease.



"We didn't know as much then," she said. "We were only aware of what was

happening in our neighborhoods. That is an observation, not necessarily a

scientific description."



That observation led the women to action. "When we started, it was great

that people were talking about a really high incidence. That did catch

peoples' attention and fan the flames," Ms. Balaban said. "We went to

legislators and made a big issue out of it. We thought maybe it was

something in the environment."



But the advocates know that misinformation persists. Ms. Balaban says that

when she hears the 30 percent figure, she tries to correct it. "Whenever it

comes up in discussion, we say, `Listen, that is not what is going on,' "

Ms. Balaban said.



In response to the lobbying, Congress enacted Public Law 103-43 mandating

the study. It was to focus on Nassau and Suffolk Counties and two other

counties that had higher incidence rates than the New York State average,

Tolland County in Connecticut and Schoharie County in New York.



But sparsely populated Schoharie County's rate fluctuated markedly,

apparently by chance. Soon after the study began it was among the lowest in

the state. But the law was the law, and researchers kept studying it.



Ms. Balaban said that she and other advocates were not thinking about breast

cancer rates across the nation when they lobbied for the study. The data

they cited, she said, showed that there was more breast caner among women

living on Long Island than in the rest of the state.



Dr. Gammon said that the New York State rate was 104.1 cases per 100,000

women. In Nassau County, the figure was 11.0 percent higher than New York

State's, and in Suffolk County it was 13.5 percent higher.



She said that no one can say for sure why the disparity exists but there are

some possible explanations. Nassau and Suffolk Counties are relatively

affluent and women there, over all, have more mammograms than women in the

rest of the state. In other affluent areas, breast cancer rates are even

higher, Dr. Gammon said, citing as an example Bergen County, N.J., where the

breast cancer rate is 121.4 per 100,000. She said the entire northeast

corridor has relatively high rates, compared to the rest of the country.



Dr. Gammon said less affluent women are more likely to have children early

and to have many children, factors that decrease breast cancer risk. They

also are less likely to have mammograms.



Dr. Eric Feuer, a statistician at the National Cancer Institute said that

mammography finds some cancers that, left alone, would never have caused

symptoms. "When mammography rates go up, incidence goes up," he said.



So is the Long Island study, which continues, a mistake, based on a false

premise? "You're not going to get me to answer that question," Dr. Winn

said.



But Dr. Michael B. Bracken, a professor of epidemiology and public health at

Yale University, says the study should never have begun. "It is an example

of politicians jumping on the bandwagon and responding to the fears of their

local population without really thinking through what is going on in

science," he said. Such a study, he added, "is not so much science as a

political response."



The study's scientists, in the meantime, find themselves trying to appease

two masters, other researchers and breast cancer activists.



Dr. Gammon says she meets regularly with the advocates, explaining her view

as a scientist and listening to their concerns. She tells them, she said,

"that I think it's biologically plausible that there could be an

environmental link to breast cancer and that we are continuing to pursue the

leads that we have gotten to date." For example, she said, she is asking if

there are genetic differences in how women respond to pollutants and, if so,

whether they are related to surviving breast cancer.



"Their perception is very different from the scientific perception," Dr.

Gammon said of the Long Island women. "They live day to day with the fear

that's out there, and I live with the scientists, knowing that the majority

of scientists don't believe there is an environmental cause of breast

cancer."



She also takes calls, many calls, from the worried public. One, she said,

from a panicked woman, was typical. "She said, `I have to move to Long

Island. Where is it safe?' " It turned out that the woman was living in

Bergen County.



"I explained to her that where she lived had a higher rate of breast cancer

than where she was moving to," Dr. Gammon said. "You could hear the silence

on the other end of the phone."





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