Monday, January 27, 2014
Thursday, January 16, 2014
Letters to Doctors: Patients Educating Medical Professionals through Practical True Life Experiences
by Jonathan by D. Herman M.D. and Teri Smieja
The BRCA Responder's rating: 5 of 5 stars
Dr. Jonathan Herman and Teri Smieja have written a book that will undoubtedly save lives. Hereditary breast and Ovarian Cancer Syndrome HBOC is simply not on the radar of medical professionals and families like it needs to be. Yes, Angelina Jolie brought global awareness to this issue last year with her major "announcement" and op-ed piece. However, the intricate puzzle pieces that go along with increased cancer risk are still not being put together by both doctors and patients. This book helps fill that void in an authoritative yet conversational way that is easy for both the healthcare professional and the lay person to understand. The result: EPIC ENLIGHTENMENT and A LIFE SAVING BOOK. Easy to read, moving, educational. A must read.
LINK TO PURCHASE
With my copy!
An excerpt from the book.
Wednesday, January 15, 2014
Bloggers are weighing in on the controversy surrounding the articles written about Stage 4 metastatic breast cancer patient Lisa Bonchek Adams by the husband and wife team Emma and Bill Keller (writing for the Guardian and The New York Times, respectively). As a follower of Lisa on twitter @AdamsLisa, I thought as "the responder" I should also respond.
Perhaps the Keller's unfortunate journalism will pave the wave for change on how cancer is depicted in future articles by all journalists. Perhaps journalists will now take the time to really research metastatic breast cancer before writing anything on it. So, in that sense…it has been a good wake up call. When Angelina Jolie came forward with her op ed piece last year, I found most journalists were completely uneducated about BRCA gene mutations and the feelings/decisions accompanying cancer risk. As a BRCA Health advocate and BRCA1 gene mutation carrier I work hard daily by tweeting, posting, pinning on pinterest about BRCA; what it means and how it feels to have a gene mutation. Lisa, on her platform, is educating daily by showing what Stage 4 metastatic cancer looks like and feels like. It is important for all of us who have voices to use them so that judgement and insensitivity can wither away and education can happen. This is why the two articles mystify me even more. For the Kellers, it seems judgement and insensitivity trumped education. They both missed a wonderful opportunity.
It is an obligation of journalists/reporters to get the story right--do the research, interview the experts, be accurate. I would say this would be even more important when writing about a patient with cancer- which is highly patient specific. When writing about someone with cancer...it also seems an ethical must for journalists to take a step back and ask themselves, is doing this or saying this in any way insensitive to the person I am writing about? It is clear that the Kellers did none of the above. The articles say way more about the Kellers than Lisa Adams.
Amy Byer Shainman
BRCA Health Advocate
BRCA1 positive, PREVIVOR
The BRCA Responder
Saturday, January 11, 2014
Wednesday, January 8, 2014
Tuesday, January 7, 2014
1 in 40 Jewish people carry a BRCA 1 or BRCA 2 genetic mutation.
Knowledge is Power. Basser Research Center's video on Jewish risk.
Wednesday, January 1, 2014
HAPPY NEW YEAR 2014
Welcome to my new blog…
The BRCA Responder
First, I tend to "not keep very quiet" regarding all things BRCA.
For those of you that already follow me on twitter…well, you know that!
I tend to "respond"…constantly, incessantly, passionately--you get the point.
Secondly, I inherited my BRCA1 gene mutation from my Dad. MY BRCA STORY
When I was younger and my Dad would ask me a question--or yell for me in my room,
he would always follow up by then yelling out:
So, Dad helped me in becoming quite the "Responder".
When you combine that with my passion for BRCA awareness, education, and advocacy you get what else?
The BRCA Responder.
So WELCOME to my new blog.
I hope you log on to my blog regularly and see how the Responder is responding.
My first post is the letter I wrote today to Dr. Virginia Moyer addressing the recent new USPSTF BRCA/genetic testing guidelines. Please feel free to copy this verbatim and/or modify it as it pertains to you and then send in two copies: one to Dr. Moyer and one to the USPSTF Senior Project Coordinator. After all, things don't change unless you respond!
So, in the words of my Dad…
Virginia Moyer, M.D., M.P.H. (Chair)
540 Gaither Road
Rockville, MD 20850
THE ENVELOPE: http://stacybrcastory.eventbrite.com
Doctors please refer all patients (including patients who are cancer survivors) concerned about BRCA mutations and cancer genetics to a certified genetic counselor. Please do not disregard their concerns as those concerns may be valid. Your patient may very well have a high risk for cancer (and if they already have one cancer may very well be at high risk for a second cancer) due to a genetic mutation, family history, or other factors in which you are not familiar or trained to decipher. If your patient had concern about heart disease you would refer him or her to a cardiologist. Please follow suit in regard to genetics. Please refer patients who are concerned about cancer risk to a certified genetic counselor.
MY BRCA STORY: http://amybrcastory.eventbrite.com
featured in the book PINK MOON LOVELIES EMPOWERING STORIES OF SURVIVAL compiled by Nicki Boscia Durlester
featured essayist in the book LETTERS TO DOCTORS: Patients Educating Doctors by Practical True-Life Experiences by Teri Smieja and Jonathan Herman, MD
Cc: USPSTF Senior Project Coordinator