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Vol. 09 Issue 2, Spring 2004

Activist Update: The History of the Breast Cancer Mapping Project
The Ribbon 

Lorraine Pace, Founder and Co-president of Breast Cancer Help, Inc.

When I was diagnosed with breast cancer in 1992, I found out that 20 other women in my community were also diagnosed with breast cancer. I was determined to find out if I was living in a high incidence area, so I contacted the Suffolk County Department of Health. After repeated calls to the Health Department, they informed me that at that time Port Jefferson was a higher risk area than West Islip. However, at that time cancer information reported from New York hospitals and submitted to the Department of Health was done by post cards that sat in boxes for approximately five years before being documented.

It was for this reason that I began the West Islip Breast Cancer Mapping Project in 1992 that pinpointed breast cancer clusters. This original mapping project, which spearheaded the breast cancer environmental movement, has now spread to other parts of New York, the United States and abroad. These mapping projects also helped prompt the Long Island Breast Cancer Study Project, a five year study, funded and coordinated by the National Cancer Institute.

The first 50 years of my life were filled with family, a career in real estate, and a return to college where I earned a bachelor and masters degree. I am a mother of three, but nothing in those years prepared me for my 50th year in 1992: the year that I discovered that the lump I had been feeling in my left breast for many years was what I had feared all along – it was cancer and had spread to my lymph nodes.

That is when I became an activist. I never smoked in my life and I am only an occasional social drinker. I was not on hormone replacement therapy and was on birth control pills for only two months. I had all my children before the age of 30. I was in excellent health, had good eating habits, and exercised regularly. Neither one of my grandmothers or my mother had breast cancer. I did everything that I was supposed to do for early detection, including having regular mammograms since my early 30s. I knew there had to be another reason why I developed breast cancer.

A while after I was diagnosed with breast cancer, it struck me that 20 other women I knew had also been diagnosed. After a great deal of thought, the one thing I could see that we had in common was that most of us lived on dead-end streets. I started to think about what this could mean.

Our community has lovely fresh air and water views. The only thing that was odd about this environment was that occasionally my tap water was rusty. I began to wonder if possibly, the metals that made the water rusty could have anything to do with the breast cancer rate in my neighborhood and the rest of Long Island. I read that the Center for Disease Control was to come to Long Island. I testified before them in 1992, less than two months after being diagnosed with breast cancer. I showed my rusty water and asked them if there was any connection.

Once I began to suspect the culprit might be the water, I looked around at other communities and at other environmental factors that could be involved. I found that New York City has a much lower rate of breast cancer than Long Island. Yet they are so close to us—just a few miles. I had to wonder, was it because they get their water from upstate reservoirs? Or that they don’t have lawns that they obsessively fertilize, dumping every kind of chemical into the underground aquifer that is our sole source of water? Or, is it because their wires are buried underground instead of overhead like they are in parts of the suburbs?

When there appeared to be no answers to my questions, I asked my oncologist, Dr. Michael Feinstein, to help me prove a theory I had about dead-end water mains. My concern was that if you lived on a dead-end street the water did not circulate as well as if you lived in the middle of the block and you were exposed to more contaminants. He offered his help to see if this theory could be proved. On his days off we met with former Suffolk County Health Commissioner Dr. Mary Hibberd and the head of the Suffolk County Water Authority, Michael LoGrande to develop a survey. Through our contacts with Good Samaritan hospital, I was able to contact Lou Grasso, editor of Suffolk Life Newspapers and Dave Wilmott, publisher of Suffolk Life. They in turn printed the survey on their front page which is how the breast cancer mapping originated.

My radiation oncologist, Dr. Allen G. Meek, encouraged me to pursue the mapping project. With the help of Maria Diorio and many other volunteers from the neighborhood we put the responses from the survey onto a map. This was done from my dining room table every day for 18 months. The map showed clusters of breast cancer with definite patterns of concentration in certain areas. After the mapping was completed we received a 69% response from the community, and that was due to efforts by friends, neighbors and volunteers. This was the first breast cancer related geographic information system ever completed. NJ Burkett of Channel 7 Eyewitness News did a series on breast cancer mapping and was awarded the FOLIO Award for his coverage. Suffolk Life Newspaper also received a FOLIO Award for their newspaper coverage.

In 1992, I started the West Islip Breast Cancer Coalition. Meanwhile, I received calls from women in Huntington, Great Neck, Babylon, Southampton, Brentwood, Islip and Brookhaven asking for assistance on how to do mapping in their towns. New York State Senators Owen Johnson and Caesar Trunzo gave a grant to the West Islip Breast Cancer Coalition to study the map, and Dr. Roger Grimson a biostatistician of Stony Brook University did the scientific analysis.

I could not have accomplished all of this without the help and support of my community, especially my neighbors in West Islip. Without Good Samaritan Hospital lending their name to the project, we couldn’t have received such an enormous response to the surveys. I would also like to thank my family for their help and support including my husband for forming the 501(c)3 pro bono, and my daughter-in-law who took her time to answer all of the calls from the survey while she was at work in my son’s real estate office.

After leaving the West Islip Breast Cancer Coalition in 1993 I started Breast Cancer Help, Inc. in 1994. I am currently co-president of this organization which I formed to help find the cause(s) of and a cure for breast cancer. Breast Cancer Help is a not-for-profit grass roots organization with a focus on action and advocacy to eradicate breast cancer. In 1994, we were one of the only breast cancer organizations to have men on our board with men acting as co-president, board chairman, treasurer, secretary, and general counsel.

For more information about Breast Cancer Help, Inc. please call (631) 661-7223 or visit www.breastcancerhelpinc.org

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Last Update 05.25.04