Wednesday, January 1, 2014

New Year! New Blog! 1st Post!


Welcome to my new blog…

The BRCA Responder

FOLLOW @BRCAresponder

Nominated for 


So, how did I come up with my blog name?

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. 

You can view my media links and listen to podcasts by clicking HERE.

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

RE:  New BRCA/genetic testing guidelines

Dear Dr. Moyer and USPSTF,

Respectfully, the USPSTF is confusing genetic testing and genetic counseling. The genetic counselor has the knowledge base to decipher with expertise the next step for the patient--which very well could be nothing. But that is for them to decide. Primary care doctors are not routinely implementing or trained in evidence based decision making for genetic testing or counseling. Angelina Jolie “started the conversation” and planted the seed which has allowed patients to bring concerns of a genetically inherited cancer risk to their doctors. The reality is that the genetics of cancer is evolving constantly and highly patient specific. Just like any other medical illness–a specialist, like a genetic counselor can evaluate a patient, determine their risk from the best available knowledge, and determine who should proceed to the next step of genetic testing. For a heart problem–you go to a cardiologist, for a nerve problem you go to a neurologist…why for a possible genetic defect would the need for a specialist be any different? I am not endorsing genetic testing for everyone. But I am endorsing genetic counseling to accurately assess a patient’s risk. Primary care doctors are not trained nor do they have the time to accurately assess a patient’s genetically linked risk for cancer. It is not their area of expertise.

As a BRCA advocate, I am in the trenches with people who are both concerned about and affected by hereditary cancer and/or elevated cancer risk. I provide face to face support for individuals plus online information and support via Twitter, Linked In, Facebook groups like the BRCA Sisterhood and Beyond The Pink Moon, Pinterest, Google, and Wordpress. More often than not, I find myself speechless. I hear so many stories of primary doctors failing to discuss hereditary cancer appropriately with patients. More than that, when hereditary cancer and genetics are discussed and primary doctors are providing the genetic testing, results are being incorrectly interpreted and patients are being incorrectly advised.  

One case in point, is Stacy's BRCA Story.
THE ENVELOPE:  http://stacybrcastory.eventbrite.com 

A better recommendation from The US Preventive Services Task Force USPSTF would have been the following: 
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.

I urge you to reconsider your position.

Thank you.

Best Regards , 

Amy Byer Shainman BRCA Advocate, BRCA1 positive, Previvor
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

1 comment:

Teknik Informatika said...

Congratulations on launching your new blog, The BRCA Responder! 🎉 Your passion for BRCA awareness, education, and advocacy shines through. How do you envision your blog making a positive impact and fostering a sense of community among those navigating the BRCA journey?
Teknik Informatika