A Progress Review of the Inflammatory Breast Cancer Registry at the University of Texas M.D. Anderson Cancer Center.
Authors: Bondy M. , Cristofanilli M. , El-Zein R. , Wiggins S. , Lara J. , Jackson S. 
Published: December 2010

Abstract
Background: The primary objective of the registry is to prospectively collect tissue, serum, plasma, and whole blood, as well as epidemiological, clinical, and imaging data from all patients diagnosed with inflammatory breast cancer (IBC).Methods: The registry contains all patients who have a new diagnosis of primary IBC, no prior treatment, are at least 18 years of age and are able to provide informed consent. Patients are excluded from participation if they have a diagnosis of secondary IBC. Patients are identified at their initial visit and give consent for the collection of biological specimens. A detailed epidemiological questionnaire is completed, derived from those used by Dr. Paul Levine, IBC Cancer Registry and Dr. Amr Soliman, National Cancer Institute of Egypt.Pathological and imaging data is collected and patients have a core and skin biopsy as part of their diagnostic procedures.Results: At present, 70 patients are enrolled in the registry and all were included in the analysis. The patients identified themselves as Caucasian, Black, Hispanic or Asian at 77%, 16%, 6% and 1%, respectively. The mean age at diagnosis is 55 years, with Hispanics showing a slightly younger age at diagnosis (48 years) when stratified by race. A majority of the population (77%) has a BMI of 25 or higher, marking them as overweight or obese. Approximately 50% of the tumors were estrogen receptor negative and 29% of the patients' tumors were triple negative (ER/PR/HER2neu). 43% also have a blood type of A positive. Seventy-one (71%) of the patients self reported as post menopausal. An overwhelming 88% self-detected their cancer, with 91% of those reporting seeing something different upon visual inspection of their breasts. Patients were asked to report any and all of the following symptoms: redness (82%), edema (77%), warmth (63%), growth (58%), dimpling skin (45%), and discharge/brown areas (15%). Approximately 39% of the patients reported having a relative with breast cancer, with 18% being a first degree relative. The mean age at menarche was 12.6 years with a mean age at first pregnancy of 22.8 years and a mean number of live births at 2.98. Approximately half of the patients reported being either a current (11%) or former (42%) smoker, with a mean number of years smoked of 23.7 years. Regular exposure to secondhand smoke in the home during childhood was also reported by 62% of patients.Discussion: This is a prospective registry, and although currently the numbers are relatively small, some observations of note can be made. The patients enrolled on the registry have a slightly younger age at diagnosis than reported by SEER (55 vs. 58.7 years). 18% of the patients had a first-degree relative with breast cancer. The majority was overweight or obese and self-detected their cancer with symptoms of edema, redness, and warmth. In the future, it will be possible to combine the information collected in the registry to be used in collaboration with other research groups, including Dr. Paul Levine and Dr. Amr Soliman's and all cases reported to the Texas Cancer Registry.
Citation Information: Cancer Res 2009;69(24 Suppl):Abstract nr 2073.