Amy & Jon's Story: Advocates for Breast & Ovarian Cancer Prevention

LETTERS TO DOCTORS

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

30 SECOND VIDEO ON LETTERS TO DOCTORS http://video214.com/play/n41ief15BNTu0G16ib52EA/s/dark

With my copy!

    An excerpt from the book.

For Lisa

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
http://thebrcaresponder.blogspot.com
MY STORY 

UNNEEDED BILATERAL MASTECTOMY?

The cost of peace of mind: A case of unneeded bilateral mastectomy 
ARTICLE LINK

MIRANDA FIELDING, MD | CONDITIONS | JANUARY 10, 2014

THE BRCA RESPONDER says

Dr. Fielding,

Thank you for this article.

I am always appreciative of articles discussing insight into bilateral mastectomy.

Unfortunately, the Angelina media spots covering her "announcement" did not offer a lot of actual BRCA and/or genetics education. Most of the news stories and articles did put the idea of breast cancer risk in the forefront of women's minds as well as the idea of prophylactic mastectomy/mastectomy.

That is awareness…and that awareness brought with it the ability for women to more easily have breast cancer conversations with their doctors.

Anything that is a conversation starter--I view as a positive.

http://thebrcaresponder.blogspot.com 

The issue that I see (and I go into more detail in my blog) is that doctors aren't referring patients to genetic counseling to correctly assess risk…so that they themselves (as well as their patients) may truly understand the breast cancer risk involved--which is a huge part in the decision making process of any mastectomy.

Did this 40 year old woman actually receive genetic counseling? Was she actually BRCA negative or just no family history? I know you said she had no family history of cancer but who was it that was deciphering her family medical history, asking questions, and deciphering her cancer risk? The counseling is a huge piece of the puzzle as the genetic counselor is an expert who knows how to correctly probe and analyze cancer 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.

You say the patient was 40 years old (younger) …was she of Ashkenazi Jewish descent? Had the 40 year old woman had any previous biopsies or other medical conditions? It is unclear in this article if those issues were addressed. I would be curious.

Without the information to these questions--puzzle pieces are missing it is unclear. It may have very well been in the best interest of the patient to go the mastectomy route--it may not have been.

I completely agree with you that physicians need to remember the principle of “primum non nocere” — first, do no harm. But included in that "first do no harm" is for the doctor to make sure their patients are properly evaluated so that they can make the best possible recommendations to them; and so that the patients can make the best possible medical decisions for themselves. That includes referring to genetic counselors and encouraging 2nd opinions.

Amy Byer Shainman
BRCA /Hereditary Cancer Health Advocate @FloridaForce http://thebrcaresponder.blogspot.com

• 

  

  
  
  

  Miranda Fielding  

  Amy, thank you so much for your detailed response. With regards to the patient I wrote about, she was not tested for BRCA, she did not receive genetic counseling, she had not had previous breast biopsies and she is not of Ashkenazi Jewish descent. Even though she was not my patient (I am her client) I did ask these questions. I absolutely concur with the value of genetic counseling, and with that more physicians would utilize this important resource, available in most major medical centers. I recently had a patient who had to make the difficult decision regarding post mastectomy radiation for bilateral locally advanced poor prognosis breast cancers at age 38--she was found to have Li-Fraumeni syndrome, a likely under diagnosed genetic predisposer to early breast cancer but also to radiation induced cancers. She sought, and I actively encouraged her, to seek second and third opinions from oncologists and genetics counselors at both MD Anderson and the Dana Farber. All of these opinions were valuable and helped her come to a decision she could live with. Again, thanks for your input.

  
  

Learn About Breast Cancer Genetic Testing Options

Ashkenazi Jewish Cancer Risk-BASSER RESEARCH CENTER

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.

New Year! New Blog! 1st Post!

HAPPY NEW YEAR 2014

Welcome to my new blog…

The BRCA Responder

FOLLOW @BRCAresponder

Nominated for 

WEGO HEALTH ACTIVIST AWARD 

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: 

"PLEASE RESPOND!"

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…

PLEASE RESPOND!

____________________________________________________________                   

Virginia Moyer, M.D., M.P.H. (Chair)
USPSTF
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

Tweet