Over the past number of months, Lobular Breast Cancer Alliance (LBCA) staff have been meeting with National Cancer Institute (NCI) staff to determine the most useful ways to show population based data for those diagnosed with invasive lobular carcinoma (ILC), also known as lobular breast cancer.
NCI maintains the Surveillance, Epidemiology, and End Results (SEER) database, which provides information on cancer statistics in the United States. This database contains information on all types of cancer. While NCI provides public facing tools to look at various breast cancer statistics available from the SEER database, these tools do not allow the user to look at histologic subtype. This means that the standard statistics about population demographics for lobular breast cancer, and how these compare to other types of breast cancer, are not readily available to the public.
Through our collaboration with NCI, we have begun to generate reports on demographic and other available data of the ILC population. This includes individuals with “mixed-type ILC”, which is those with ILC and another invasive carcinoma of the breast.
To put these statistics in context, we have asked NCI to provide the same statistics for invasive non-lobular breast cancers to serve as a comparison group. We are happy so share the first installation of these statistics with you in the datasheets below that include very basic demographic statistics. We are encouraged by our collaboration with NCI staff on these efforts, and we will be sharing more information as it becomes available. LBCA will update the statistics as they are updated in NCI’s systems. Please note that there is a several-year lag in the data statistics that NCI releases in the SEER database due to the time intensive nature involved in collecting, reporting, and synthesizing these data on a national level.
If you are interested in learning more about how cancer data is collected in the US, who uses the data, and how they use it, watch LBCA’s Advocate Chat titled How We Know What We Know About Cancer Data: A Conversation with Dr. Nadia Howlader, NCI Surveillance Research Program.