An illuminating article about Cancer Clusters appeared in the September, 1996 issue of Scientific American: Why Community Cancer Clusters Are Often Ignored
But most cancer clusters appear to happen by chance. It is largely for this reason that health officials these days are usually reluctant to investigate reports of localized excesses in cancer incidence-even the Centers for Disease Control and Prevention gave up routinely investigating cancer clusters in 1990 because they required such intensive resources and yielded so little information in return.”
Another article about cancer clusters was published by Medscape, and requires user log in. “What is a cancer cluster? According to the NCI, a cancer cluster is a geographic area, time period, or group of people with a greater than expected number of cases of cancer. A report from The American Council on Science and Health, now published in Medscape General Medicine, discusses the evidence collected on the potential clusters of pediatric cancer in Toms River, New Jersey and of breast cancer in Long Island, New York. Was it by chance, environmental factors or, simply, geography?”
Three woman, working in an office of eighteen women, were diagnosed with inflammatory breast cancer in just a ten month span of time. The following is an excerpt of a newspaper article that appeared in The Castro Valley (California) Forum on October 11, 2000.
Researchers to Study Eden IBC Cluster
A cluster of an uncommon and aggressive form of breast cancer in Castro Valley has caught the attention of national breast cancer researchers.
Scientists from the Inflammatory Breast Cancer (IBC) Research Foundation are preparing grants to fund a study of three women employed in the Eden Medical center business office who were all diagnosed over a 10-month period. The researchers are hoping to create a registry of IBC patients, but money is not easy to come by and they have already been turned down once.
“This is a very competitive field to be in,” said Owen Johnson of the Foundation. “The fact that we got turned down has nothing to with the disease being uncommon.”
The National Cancer Institute received more than 400 grant requests and only funded 31 according to Johnson. Two more grant applications for the project are currently under consideration.
Only eight new cases of IBC are expected to be diagnosed per year in Alameda County compared to 950 cases of invasive and in situ breast cancer, according to the Northern California Cancer Center.
However, just because it is uncommon does not mean that studying it is unimportant said Johnson.
Johnson has been working with Dr. Paul Levine, clinical professor of epidemology and biostatistics at George Washington University in Washington D.C.
Levine, who studied a surge in the cases of IBC in Tunisia for 10 years, is assembling a team researchers to study the Eden cluster.
“IBC is probably the tip of the iceberg for aggressive breast cancers,” said Levine “It is very important to understand why some people have aggressive cancer and some do not.”
Both Johnson and Levine plan to come to Castro Valley at the end of November.
Johnson has also been in close contact with the three Eden women who were diagnosed with the disease. Diana Robinson of Castro Valley, who was the first of the three to be diagnosed, can’t say enough of his efforts.
“He has been the only one who has taken an aggressive interest in this,” said Robinson. “He’s so dedicated. He really gives us the feeling that somebody cares.”
Cynthia Jansen, who was diagnosed in February, wants something good to come out of her experience with the disease. She has even donated tissue samples to help research efforts.
Both women also want to help educate others about IBC, which has symptoms that are not typically identified with more common forms of breast cancer.
Robinson had noticed a pinkish color to her breast but it was not until she had a routine mammogram that she discovered she had IBC. It was the first time she had every heard of the disease.
“Don’t just look for a lump,” warned Robinson. “Be aware that there’s another type of breast cancer out there.”
Inflammatory breast cancer usually grows in nest or sheets rather than as a defined tumor. IBC can cause a breast to look red and swollen, feel warm and the skin can have a pitted texture like the skin of an orange.
Other symptoms include sudden swelling, itching, a bruise that does not go away, the sudden finding of a lump, nipple retraction or discharge and breast pain.
Like most breast cancer, the earlier it is detected the better.
Robinson has undergone chemotherapy and surgery and her co-worker Jansen is facing surgery soon. Both women are hopeful about being free of the disease. The third woman who was diagnosed with IBC was unable for comment at press time.
All three women worked in the same office at Eden for many years. When they all were diagnosed, Eden had the building evaluated, testing water, air, and radiation levels, but no significant environmental problems were found, other than the need for a little more ventilation.
However, workers in the office asked to be moved anyway and there are plans to relocate the office to Oakland.
Dr. Levine plans to look at a variety of factors when studying the Eden cluster and at this point, is reluctant to rule out any potential cause of the cluster, including coincidence.
He stressed that they were in the very initial stages of a study and his team is still in the process of formulating questions to address.
Gathering information, as both Levine and Johnson believe, is key to finding a cause and eventually a cure for the disease. Levine wants to create a national patient registry that will not only include how many people have the disease but more detailed information about each case.
Having such a repository of information available to a wide range of scientists can hasten discovery of the causes of the disease.
Levine helped create a similar registry for Burkitt’s Lymphoma that resulted in discovering a link between that disease and Epstein Bar virus.
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