3/28/14 @BRCAresponder WEEKLY

Amy Byer Shainman - The BRCA Responder - BRCA Health Advocate - BRCA 1 Positive Previvor On twitter @BRCAresponder Please note: HEREDITARY CANCER/BRCA SYMPOSIUMS/CONFERENCES listed in this WEEKLY!

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  1. Mary-Claire King, Science, Studies & Reports

  2. @BRCAresponder comments at end of Science Summit article  

    ..."Jolie’s story did a fantastic service in educating the public about preventative surgeries"    I have to disagree. Jolie's story did a fantastic job of bringing global awareness to the words "BRCA" and "BRCA gene", and the words "preventative surgery"--the story itself did not educate the public about actual preventative surgeries...
  3. DENSE BREASTS

  4. EXCERPT from article:  

    The average at-risk woman — or even a woman at low risk of cancer — who has dense breasts should consider adding an ultra sound, Larrinaga said.

    If they are at high risk for breast cancer, Ross Breast Center tells them they need an MRI, he said.

    “If they have dense breasts and are not at extremely high risk for breast cancer, then we tell them they should get an ultrasound in addition to their yearly mammogram,” he added.

  5. YOUNG MODEL, AGE 22 fighting breast cancer 

    Misdiagnosed 3 times, young at diagnosis, and the article does not mention/address genetics at all.
  6. @BRCAresponder OPINION

    DYING TO LIVE Documentary, COPPAFEEL! coppafeel.org--Kris Hallenga

    Unfortunately, Dying To Live cannot be viewed in the US at this time.  No articles I can find on Kris' story address genetics. 
    As per my UK contacts: The film does not address genetics. Film link for UK, news on Kris below.
    I really appreciate the goals and mission of CoppaFeel and agree it is so important to educate young people on the signs and symptoms of breast cancer -- and yes to check boobs on a regular basis so that young people learn what is normal for them.  I completely admire what the CoppaFeel organization is doing and Kris herself as she is such a bright, inspirational outspoken advocate amidst a very tough breast cancer diagnosis. In addition, I completely understand the organization's need to "keep it simple" in terms of its mission. With that being said, as an advocate for hereditary cancer (not just BRCA) I must impress upon COPPAFEEL that indeed hereditary cancer information is very relevant to Kris' story.  Since, Kris was 23--(early onset) very young at the time of her breast cancer diagnosis, her story must include sharing some genetics information/answers publicly to capitalize on breast cancer "awareness". For example, it only takes one small paragraph in an article, or one minute in an interview, to discuss what exact genetic testing and genetic counseling Kris actually underwent and WHY she underwent it.  It takes five seconds in an interview or one sentence in an article to include her genetic test results. It takes ten seconds in an interview or two sentences on a page to include the reasons of why her cancer was not hereditary. Simply omitting this information publicly is exactly that--a huge omission and a lost opportunity to save lives. Cancer at a young age is a hereditary cancer sign; the discussion surrounding very young age of diagnosis needs to be "hereditary until proven sporadic".   
    Yes, as per Coppafeel's mission, early detection does save lives. But regardless of when or how a 'breast cancer' is identified, it is the inherent qualities of the cancer that matter most with regard to a course of treatment and the probability of a successful outcome." ( http://www.cnn.com/2014/03/18/opinion/sulik-spanier-mammograms/ )  
    Aggressive, hard to treat cancers can often have a hereditary component. There are so many hereditary cancer syndromes beyond BRCA. The lack of discussion about genetics in Kris' story makes me wonder how thorough was Kris' genetic counseling and testing?  Did she even see an actual genetics expert?  Is there indeed a genetic component to her breast cancer?  Will the public ever know? Will that piece of "awareness" information ever be shared?  What was Kris tested for and why? If Kris' cancer is not hereditary...WHY is Kris' cancer considered sporadic and not hereditary? 
    I respectfully request and urge Kris and CoppaFeel to "#rethinkcancer" and this important component of sharing and not omitting. Kris and her genetic counselor (does she have one?) would be able to shed a new level of light and ultimately, lives will be saved. I was told by a member of CoppaFeel that the organization has been become expert in communicating its potentially life-saving message to young people (to "cop a feel" and early detection). This leads me to believe sharing some of this potentially life-saving genetics information would be quite easy for Coppafeel to incorporate into their public communication going forward.
  7. CoppaFeel! info, BBC News on Kris, film link for UK, thoughts from twitter
  8. Small breasts, large breasts…size is irrelevant; #breastcancer can affect any man or woman
  9. *Remember to hit Read Next Page to view conferences/symposiums! 
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