Focus on IBC

November 2012    


The newsletter from the Inflammatory Breast Cancer Research Foundation  

Upcoming Events 

November 7, 2012
The Impact of Diet: Understanding Today's Nutritional and Healthy Living Guidelines; teleconference; 12:00 p.m. - 1:00 p.m.; from Living Beyond Breast Cancer;
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November 30 - December 1, 2012
ASCO Quality Care Symposium; Manchester Grand Hyatt, San Diego, CA; advocate discounted registration rate by 10/24;
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December 1 - 2, 2012
3rd International Inflammatory Breast Cancer Conference; Sofitel Philadelphia, Philadelphia, PA;
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December 6 - 10, 2012
San Antonio Breast Cancer Symposium; Henry B. Gonzalez Convention Center, San Antonio, TX;
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February 22-24, 2013
Conference for Young Women Affected by Breast Cancer; Seattle, WA; Hyatt Regency Bellevue
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April 6-10, 2013
American Association for Cancer Research (AACR) Annual Meeting; Washington, DC
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Updated Web Page!

New additions to the IBC Research 2011 page (in addition to the 10 articles previously noted on that page). If free full text of an article is provided, it is linked on our pages. If the abstract only is provided, there is a link to the record in the PubMed database because some articles eventually provide free full text.

Le-Petross, H. T., et al. (2011). MRI features of inflammatory breast cancer. American Journal of Roentgenology, 197(4), 769-76. Free full text available.

Bekhouche, I., et al. (2011). High-resolution comparative genomic hybridization of inflammatory breast cancer and identification of candidate genes. PLoS One, 6(2). Free full text available.

Iwamoto, T., et al. (2011). Different gene expressions are associated with the different molecular subtypes of inflammatory breast cancer. Breast Cancer Research and Treatment, 125(3), 785-95. Abstract available.

Goldfarb, J. M., & Pippen, J. E. (2011). Inflammatory breast cancer: the experience of Baylor University Medical Center at Dallas. Baylor University Medical Center Proceedings, 24(2), 86-0. Free full text available.

Li, J., et al. (2011). Triple-negative subtype predicts poor overall survival and high locoregional relapse in inflammatory breast cancer. The Oncologist, 16(12), 1675-83. 

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SystHERs Registry

Genentech is hosting a new observational study to learn more about life for Her2 metastatic breast cancer patients.  This multi-institutional study opened in June of 2012.  The name SystHERs (Systemic Therapies for HER2+ metastatic breast cancer study) defines the project and builds on a previous registry study hosted by Genentech. 

The purpose of the SystHERs Registry is to evaluate treatment patterns, and safety in patients with Her2 positive (HER2+) metastatic breast cancer.  An observational study such as this collects both clinical and patient reported data.  Eligible patients need to have an initial metastatic breast cancer diagnosis that has not been previously treated with systemic therapy.  Patients may be enrolled up to 6 months after this diagnosis.  Patients will be followed and study data will be collected for up to 8 years.

Unlike a traditional clinical trial where patients are randomized to a standard treatment arm vs. standard treatment with a new medication, this is a different model.  In this observational study treatment is determined by the physician and patient rather than predetermined by the study.  Again, patients must be 18 years of age or older and diagnosed with Her2+ metastatic breast cancer no more than 6 months before enrollment.  To be eligible for the registry patients may not have received systemic therapy for the metastatic diagnosis.

Currently there are 70 locations open or opening for the Registry with the plan to add locations and bring the total to 100.  It takes a significant amount of time for an oncology office to participate in this project, limiting the number who are willing to participate.  Some of the participating sites listed on-line are not ready to accept patients yet, but are in process, so check-back if you don't see one in your area yet.  The Registry hopes to have 10 patients enrolled in each of the 100 sites for a full enrollment of 1000 patients.

A steering committee consisting of breast oncologists, Genentech staff, and advocates has been working together to develop the protocol and guidelines for the project and will continue to be "hands on" for the duration of the study.  Dr. Debu Tripathy of USC Norris Comprehensive Cancer Center currently chairs the steering committee.  ibcRF Executive Director, Ginny Mason and Musa Mayer of provide an advocate voice and perspective to the steering committee.  Ginny and Musa are working closely with others on the steering committee to choose appropriate patient reported outcomes (PROs) tools for the Registry.  Easily understood, comprehensive PRO's are necessary if quality data is to be collected.  By asking the right questions, important long-term data can be collected in an effort to better understand the patient experience for those living with Her2+ metastatic breast cancer.

If you or someone you know meets the eligibility criteria for the SystHERs Registry or just to learn more, go to:  

Lynn Sage Town Hall Meeting by Gayla Little

Every year at the end of September, a meeting is held on the Chicago lake front that is absolutely wonderful. It is the Lynn Sage Town Hall Meeting which is an event offered by Northwestern University's Lurie Cancer Center. The event is free. You can even get a voucher to cover most of the cost of your parking.

photo of IBC research display There are two parts to the meeting and the Inflammatory Breast Cancer Research Foundation is privileged to be there. The organizers of the event set out a finger foods buffet and those who attend have the opportunity to browse booths from various breast cancer organizations, to ask questions and to get literature as they nibble.  We are always happy to be there, brochures and bookmarks in hand, to tell people about inflammatory breast cancer.

After about an hour of browsing, attendees are asked to enter an auditorium where five experts from Northwestern University's cancer center are sitting on stage. The program is all question and answer.  Many women take the opportunity to ask about their own cancer experience. They want to know if they are getting the absolutely best treatment.  Others ask questions about breast cancer in general. The doctors on stage answer questions and give information on new research and treatments that have been developed. A nutritionist is there to answer questions about good nutrition and building one's immune system to be better able to fight cancer.

Questions are asked about some breast cancer myths, which are debunked by the experts. This year, a lady was present who wanted to convince us all that we needed to give up sugar to fight our cancer.  "Isn't it true that cancer cells feed on sugar?" she asked. "You've got to understand," said that doctor, "that all your body's cells feed on sugar" was the reply. Another topic that was of interest this year was Universal Health Care. Everyone, both patients and doctors, was a little nervous about it.

Unlike other events which are lecture style and the doctors tell you what they want you to hear, this format is a traditional town hall meeting and they answer the questions that the patients want to ask.  People can find support services by browsing the booths.

This year was my second time to staff the booth at Lynn Sage and I will do it as often as I have the chance. I always learn new information and I meet new people. If you are in the Chicago area at the end of next September, consider attending the Lynn Sage Town Hall Meeting. It is held on the corner of Chicago Avenue and Lake Shore Drive and you will be glad that you went.  


logo of symposium "The goal of this symposium is to bring together global public health actors and advocates, and researchers on breast cancer prevention and nutrition to provide a platform for discussion among scientists, clinicians, and other professionals in the biology, epidemiology, medicine, nutrition, communication, education and public policy fields."  This rather lengthy description could be found on page one of the symposium booklet, introducing participants to the purpose of the symposium.

"Models for Breast Cancer Prevention: From Innovation to Action" was the title of this year's symposium held Oct. 10-12 on the campus of Purdue University in West Lafayette, Indiana.  The International Breast Cancer and Nutrition (IBCN) group was the primary sponsor.  This is the third symposium in what will hopefully continue as an annual event.  Last year's symposium was held in France and next year's planned location is the American University of Beirut, Lebanon.

The International Breast Cancer and Nutrition program was initiated by Purdue University and aims to promote coordinated, yet country-tailored, breast cancer prevention research all over the world. The program focuses on the impact of nutrition on the epigenome with the possibility to extend to other environmental factors.

The two and a half day symposium was packed with a variety of speakers and topics. Those attending came from around the globe representing Ghana, Lebanon, the UK, France, Guadeloupe, Qatar, Canada, Ethiopia, Nigeria, Iran, Uganda, Australia, and the U.S.

Day one, participants learned about the challenges of developing a breast cancer screening program in Qatar, interdisciplinary cancer prevention research, and various model systems used in the study of breast cancer research, in addition to many other topics. Day two focused on global diet and cancer prevention, breast cancer in young women, and presentations by Purdue graduate and postdoctoral students. An evening forum, open to the public highlighted Dr. Susan Clare's study of normal breast tissue and Dr. Les Reinlib's work on breast cancer risk and the environment. The final day was again a mix of topics such as metabolomics research, a biorepository in
Uruguay to aid in breast cancer research, and how to analyze large
heterogeneous public health data using R (a unique computer program designed for such analysis). Dr. LeMeur from the French School of Public Health did an amazing job of presenting biostatistical analysis to a very diverse and tired audience.

It would be hard to sum up the overall 'take home' message from the
symposium due to the wide variety of topics and speakers. While there are some promising nutritional actions that could impact both prevention and treatment of breast cancer, it is clear that multiple variables need to be overcome before significant measurable progress can be made. In most cases the symposium raised more questions than it answered, however it was exciting to see such a global, diverse, and interdisciplinary group assembled to tackle these issues.  Important dialogue took place during the Q & A sessions as well as break times. While the advocate presence was small, you can be sure we were not quiet! I signed-up for this symposium with some skepticism given the current research on the topic of nutrition and breast cancer prevention. However, by the end of the symposium I'd learned that there are research avenues that hold promise and need to be explored further.