Impact of Oophorectomy on Cancer Incidence and Mortality in Women With a BRCA1 or BRCA2 Mutation

The BRCA Responder

With BRCA gene mutations and a new BRCA study in the news again (full study below), I would like to take an opportunity to explain some BRCA basics.  GIVEN: of course It is EXTREMELY important to have a healthy diet and lifestyle. With that being said, a BRCA1 or BRCA2 positive gene mutation carrier can eat healthily until the cows come home--that does not take away that person's inherent cancer risk--they are born with increased cancer risk. 

Let me explain:

Everyone has BRCA1 and BRCA2 genes. Those who carry a mutation in one of those genes are BORN with the increased cancer risk. We all inherit one BRCA1 gene from our father and one from our mother. We all inherit one BRCA2 gene from our father and one from our mother. The BRCA1 & BRCA2  genes are tumor suppressing genes. When you inherit a mutated BRCA1 it means you only have one "working' BRCA1 gene protecting you.  If you inherit a mutated BRCA2 it means you only have one working BRCA2 gene working to protect you. People can inherit both one mutated BRCA1 and one mutated BRCA2 gene. However, two mutated BRCA1 genes are not compatible with life. I believe that alone shows how dangerous these mutations can be. 

One thing important to point out is that research has shown that women who carry BRCA1 gene mutations tend to get triple negative breast cancer when they do get breast cancer. Triple negative breast cancer is VERY aggressive, VERY hard to treat cancer. So, even a "small cancer", "small lump or tumor" can mean your journey (your life) is virtually "over" right when cancer begins. Removal of the ovaries prior to natural menopause actually reduces one's breast cancer risk by 50%. As a BRCA positive woman, these were two of my own reasons for making the personal decision to have preventative surgeries. BRCA genetic mutations are dangerous. Knowledge and education about these gene mutations can be life-saving.

I hope this helps shed some light.

Amy Byer Shainman, The BRCA Responder

BRCA1 positive, Previvor, BRCA Health Advocate

From the Journal of Clinical Oncology-February 2014

READ THE STUDY

& please comment below!

Amy P.M. Finch, Jan Lubinski, Pål Møller, Christian F. Singer, Beth Karlan, Leigha Senter, Barry Rosen, Lovise Maehle, Parviz Ghadirian, Cezary Cybulski, Tomasz Huzarski, Andrea Eisen, William D. Foulkes, Charmaine Kim-Sing, Peter Ainsworth, Nadine Tung, Henry T. Lynch, Susan Neuhausen, Kelly A. Metcalfe, Islay Thompson, Joan Murphy, Ping Sun, and Steven A. Narod 

FEBRUARY 24, 2014 

The BRCA Responder on

WPTV NBC NEWS West Palm Beach, FL
"I wanted to live and I basically wanted to remain breathing," says Shainman, 
"My best chance for that was to get my ovaries out."

Amy Shainman, The BRCA Responder
BRCA 1 positive previvor, BRCA Health Advocate
WEGO Health Award finalist for PINTEREST

READ MY BRCA STORY

MAGIC PEAS

The BRCA Responder

Joelle Burnette has some Magic Peas and I want some.

Where did she get them? Did she get them from previously working on Capitol Hill? Did she get them from her mom; also a fine artist, always busy with things, and who just gets "these ideas"?

Or perhaps from her sister Renee, Joelle's protector who died in a car crash when she was only 19 years old. Joelle was just 12 at the time.

Joelle Burnette is a reporter and she carries around her little notebook and writes things down exactly as they happen.

Joelle Burnette

CANCER TIME BOMB

She did this with her previous book CANCER TIME BOMB, HOW THE BRCA GENE STOLE MY TITS AND EGGS. Burnette had her handy little notebook with her at Macy's while getting her first post mastectomy bra. So when her Aunt said,"Oh, I don't know why you are so upset?" Burnette wrote it down and the story made it into her hilarious, heartfelt Cancer Time Bomb.  

So what's with these Magic Peas?  They are beautiful, glorious, and magical--and like I said, I want some.

Magic Peas and Two Front Teethis Burnette's new project also from her reporter's notebook…but based on a story with her own daughter Sophie and getting her to eat her vegetables. It is a sweet tale about Zoe who loses her baby teeth, then learns to enjoy healthy snacks while eagerly awaiting her new teeth to grow in. In the story, at bedtime, Zoe asks her mother how she can make her teeth grow in more quickly. Each evening, her mother suggests she eat a different healthy snack the following day.

FREE MAGIC PEAS BOOKMARKS TO PRINT!

Burnette is beyond talented. Her 20 oil paintings for Magic Peas are equally as vibrant as her humor in Cancer Time Bomb.

MAGIC PEAS & TWO FRONT TEETH
with SNACKS & SIDES ACTIVITY BOOK

There are less than 3 days left on this truly talented BRCA sistah's  kickstarter campaignfor PEAS. If Burnette does not reach meet the total goal…she will not receive any of the funding that has been pledged. 

I absolutely love the artwork, story, and adore the snacks and sides activity pages.

I support all things BRCA and feel it's important to support all of our fellow BRCA sistahs and mistahs in all of their creative endeavors of spirit, stories, and song. It's simply good BRCA karma.

More than that, of course it's important for ALL kids to eat as healthily as possible. However, for kids of parents that have high risk for cancer or carry a BRCA gene mutation; they may just inherit that high cancer risk or that BRCA gene mutation too. While we can't take away that inherent risk we may have passed on to our children, we can do our best as parents to give them every possible extra advantage in life. My kids need that extra advantage. 
So, I want some Magic Peas. 

"All I am saying…is give peas a chance."

PLEASE VIEW AND SUPPORT JOELLE BURNETTE'S AMAZING PROJECT ON KICKSTARTER

http://kck.st/1ax7CjM

Amy Byer Shainman
THE BRCA RESPONDER
http://thebrcaresponder.blogspot.com 

DIGGING DEEPER…Beyond the Pink

The BRCA Responder

Breast Cancer Awareness Game is personal for Fresno State women's players 

BY BRYANT-JON ANTEOLA The Fresno BeeFebruary 11, 2014 

In the above article the mention of the moms being young at age of diagnosis (40) makes me hope both families are aware of cancer causing genetic mutations and hereditary cancer. One of my goals as a BRCA Health Advocate is to respond to articles like this so that the journalists/writers are more well versed about hereditary cancer and will know to ask deeper questions in a next interview. Ultimately, knowledge is power and both Robin Draper and Bree Farley may very well be at higher risk for breast cancer themselves; due to a genetic mutation…or simply because of their family history. Anytime there is a "young" age of onset of breast cancer, It's important for patients, families, doctors, and journalists, to go beyond the "PINK", delve further into the family story, and bring up genetics and genetic counseling and assessment. 

Bottom line: Digging deeper, beyond the pink, can save lives.

Amy Byer Shainman
BRCA Health Advocate
BRCA1 positive, PREVIVOR
thebrcaresponder.blogspot.com

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

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  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.