Tuesday, February 25, 2014

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

& 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 

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

Sunday, February 16, 2014


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.
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.

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

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."


Amy Byer Shainman

Wednesday, February 12, 2014

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