Focus on IBC        
April-May 2010 
IBC Research Foundation Newsletter
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May 22-25 -National Breast Cancer Coalition Fund Annual Advocacy Training Conference; Washington, DC

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Interested in Being a Media Star? 

By, Ginny Mason, RN, BSN
 Executive Director, ibcRF
 
Many visitors to the Inflammatory Breast Cancer Research Foundation website are looking for photos of inflammatory breast cancer (IBC) to help determine if their symptoms "fit" classic IBC.  They've read through the symptom list and now want to "see" what the disease looks like.  
 
An internet search of photos depicting IBC will bring up a variety of images, but many of them are not very clear and don't really show the range of presentations of the disease.  The Inflammatory Breast Cancer Research Foundation website has a few photos, graciously shared by patients over the years; but they are limited in scope and certainly don't represent the wide variety of symptoms that can accompany IBC.  It seems the symptoms are just as unique as each individual, making diagnosis all the more challenging.
 
These photos aren't only accessed by those with "worrisome symptoms." We get many requests from media personnel who want photos to enhance their stories.  With advancements in technology, most media requests ask for "high resolution photos" and unfortunately the photos we currently have on our website are not high resolution, making them unsuitable for their purposes.  It is disappointing when we aren't able to provide the graphics needed for television or print media.  Those are missed opportunities for public education.  Quality pictures speak volumes and help get people's attention.
 
Now, here is your opportunity to be a "media star" !!  Did you take pictures documenting the progression of your symptoms?  Do they show the variations of skin changes like rash, "bug bite," bruising, or other skin discolorations?  Are you able to see the peau d'orange (pitting of the skin) or the increased size (swelling?)
 
High quality, high resolution photos that show these skin symptoms are so important for educating the public and for those visiting the website with questions about "what does IBC look like."  Since IBC is a clinical diagnosis, the visual symptoms are of utmost importance.
 
In addition, a number of people have contacted the website and asked if we have photos that show the visible breast symptoms in African American women or other women of color.  Unfortunately we do not have photos to meet those requests and really need these photos to provide an accurate representation of IBC.  The more variety of skin color and symptoms we can offer, the better.  Not everyone has those textbook intense symptoms, and seeing a variety of presentations can empower patients to take action.  Photos of skin metastasis are also needed to guide those with potential progression.  Skin lesions can vary just like initial symptoms.
 
If you have pictures you would be willing to share with the Inflammatory Breast Cancer Research Foundation, please let us know.  Of course all photos will be cropped in such a way to only show the breast symptoms, and there will be no identifying information accompanying the photos.
 
Here is your chance to be a media star!!  Of course you will be an anonymous star, since your face will not appear in the photo; but you'll be a star just the same.  In fact, photos of your IBC symptoms are some of the most important photographs you can share.........they just might help someone get the diagnosis and treatment they need.
 

 Genome Study of Aggressive Breast Cancer Yields Clues to Metastasis 

 
The recent issue of the National Cancer Institute (NCI) Cancer Bulletin (April 20, 2010) highlights an article by researchers from the Washington University School of Medicine in St. Louis, reported in the April 15 issue of Nature.  The study was presented at the recent American Association for Cancer Research Annual Meeting in Washington, DC, as part of a mini-symposium on genetic sequencing.
 
The study patient was a 44 year old African American woman with triple negative inflammatory breast cancer.  The triple negative or 'basal-like' subtype is more common in younger women as well as African American women.  Studies have shown that these tumors are very aggressive and have a poor prognosis.
 
This group of researchers had the unique opportunity to study how cancer cells change as the disease progresses by doing genome analysis of four DNA samples from a patient diagnosed with triple negative inflammatory breast cancer.  Samples were obtained from the primary breast tumor, brain metastasis, and normal blood cells.  Using cells from the original tumor researchers were able to grow tumor in a mouse (this is a xenograft).
 
Genetic mutations, structural changes, and differences in the number of gene copies were studied in the four samples.  Analysis of the data confirmed earlier reports that basal-like breast cancers have unstable genomes.  There were mutations common to all three tumors (primary, metastatic and xenograft) but most of the original mutations in the original tumor were also present in the metastatic and mouse tumors.
 
While a single patient genomic study doesn't provide robust data it does allow for comparison of the tumor in different sites and examine the similarity and changes that occur from primary tumor to metastasis.  Dr. Patricia Steeg, head of the Women's Cancer Section in the National Cancer Institute's Laboratory of Molecular Pharmacology was quoted as saying, "this study is a true tour de force in genomics."  Dr. Steeg has been studying breast cancer metastasis for much of her career and is currently leading the work of the Center of Excellence program studying brain metastasis of breast cancer.
 
A previous study, published last year, reported on whole-genome sequencing to study both primary tumor and metastasis.  A significant difference in the two studies is the time from primary tumor to metastasis.  In the study published last year it was 9 years from primary tumor to metastasis and less than a year in the current report.
 
Genome studies are fast becoming more feasible economically and are being done on larger groups of patients.  The Washington University School of Medicine study group is already doing tumor-normal genome comparisons and will publish larger data sets and analysis in the future.
 
To read the full NCI Cancer Bulletin article:
http://www.cancer.gov/ncicancerbulletin/042010/page7