Monday, December 15, 2014

TO REMAIN BREATHING

Updated 12/17/14:   RIP Annie Goodman. 

I tweeted with Annie back in March. I have included that interaction below.
I dedicate this blogpost to Annie as "she wanted to bring attention so more women wouldn't have to follow her." 

Annie Goodman was BRCA1 positive and had triple negative breast cancer. She passed away today at only 33 years old--the same age my grandmother Lillian passed away in 1934. 



@BRCAresponder 





You may not understand everything surrounding increased cancer risk. If you have a family member or friend diagnosed with a BRCA gene mutation, other genetic mutation, or diagnosed as high risk for certain cancers, please read this. My hope is that this post will inform and enlighten you about increased cancer risk and cancer risk management decisions.






Research studies, scientific abstracts, The "Angelina Effect", the "Etheridge controversy"... 

The research, the news articles, the conversation--it's all good. BRCA gene mutations are getting attention. 

But, let's bring it back to earth for a moment. It's important that there is some tangible perspective on what dealing with an increased risk for cancer actually FEELS like to an individual; a not so gentle reminder that there are people everyday learning that they carry a BRCA gene mutation, other genetic mutation, or a genetic variant of unknown significance. There are some people living with an increased risk for certain cancers simply due to their family medical history. There is no "one size fits all" approach. Cancer risk and cancer risk management is highly patient specific. What is clear for individuals with increased risk for certain cancers, is that there are heavy decisions surrounding cancer risk management. 

Everyone has their own personal experiences and beliefs that go into their own cancer risk management decision making process. I want to share some of my thoughts in my own decision making process. I'm hoping it will educate and enlighten others on how deeply personal these risk management decisions are plus the many, many layers that can go into the hereditary cancer risk management decision making process.  

GOT RISK? 


For me, the bottom line was: 
I wanted to remain breathing--I wanted to be alive, to live.


I made my personal decision to have preventative surgeries (bilateral prophylactic mastectomy and reconstruction and complete prophylactic hysterectomy) based on MANY factors...here are JUST 18 reasons I made my very personal decision:

 1) I carry a BRCA1 genetic mutation & the science indicates I have a very high risk for cancer. I educated myself and learned that these surgeries were currently the best chance/best option I had at DRASTICALLY reducing my breast cancer and ovarian cancer risk. As a BRCA positive woman, it was my best chance for "a cure".
 2) the actual large pattern of MANY breast and ovarian cancers in my family-with many deaths at YOUNG ages 
 3) I previously had a benign brain tumor; a very intense experience both physically & emotionally -- I decided I did not want to EVER go through an actual cancer diagnosis if I could help it. I was already having brain scans every few years. I saw a life before me of brain scans and boob scans. I did not want that to be my existence, my life.
 4) seeing my sister on the ground in the relentless, death pain of ovarian cancer. 
 5) watching my dear friend Kristin (also BRCA1 pos.) go through triple negative breast cancer (very difficult to treat) , radiation, chemotherapy, and then die at age 42 leaving behind her young daughter and husband. 
Kristin
My grandmother

6) knowing the research shows that BRCA1 carriers tend to get triple negative (very difficult to treat) breast cancer - I had no interest in having triple negative breast cancer or any kind of breast cancer ever if I could help it 
7) having utmost confidence in my breast surgeon and plastic surgeon, both knowledgable about BRCA mutations. 
8) Knowing my grandmother died at 33 years old of breast cancer in 1934 & having the knowledge that her fate did not have to be mine 
9) not wanting to live with constant anxiety- anticipating my next MRI's, mammograms, ultrasounds. I didn't want to live a life of anxiety.
10) Knowing that there are no accurate surveillance methods for ovarian cancer 
11) My sister had uterine cancer in addition to ovarian cancer...and then went on to get breast cancer 

Me & My Sister

12) A nipple sparing, skin sparing bilateral mastectomy with reconstruction can be a one-step surgery--the nipple and skin remains intact. Reconstruction has come a long way. It's just fat and tissue I thought--& who needs fat and tissue if it can kill you! Let's replace that stuffing so I can live. 
13) the anxiety of constantly touching my breasts to feel for lumps 
14) I did not want to go through chemotherapy if I could help it 
15) Knowing I needed to be here for my kids 
16) I needed to be here for my husband 
17) I needed to be here for me 
18) I needed to live, to be alive; to remain breathing.

Amy Byer Shainman
BRCA 1 positive, previvor
BRCA/Hereditary Cancer Health Advocate

*Everyone is different. Cancer risk management is highly personal and highly patient specific.  What is right for one person may not be right for another. Always do your own research and consult with your own medical professionals. 

Find a Genetic Counselor: 

www.nsgc.org
OR

Wednesday, December 3, 2014

Where are we now? Almost 2 years later, a follow up to the 2013 Cure Magazine Article "Risk Management: Living in the Past, Present and Future with Genetic Risk"


http://twitter.com/BRCAresponder
Our grandmother Lillian Byer
Lillian died September 23, 1934 
She was 33 years old.
Since 2013, thankfully, both my sister Jan and I remain healthy. We both monitor ourselves regularly with various doctor's appointments. Even though I underwent a prophylactic nipple-sparing, skin sparing, bilateral mastectomy with reconstruction plus a complete hysterectomy (both in 2010), I still see a high risk oncologist every 6 months. My oncologist gives me a manual breast exam, regular blood tests (which include a CA-125 blood marker test), and she also monitors my bone density. My oncologist also sent me for my first colonoscopy; making sure I went to a gastroenterologist who is knowledgeable about BRCA mutations and hereditary cancer risk.


This blog post is a follow up to the 2013 Cure Magazine article:                                                            

"Risk Management: Living in the Past, Present and Future with Genetic Risk"  2013


When I look at this recent picture of me & my sister belowit's hard for me to believe how much we have both been through medically. I would bet that no one would be able to tell from this picture that my beautiful sister Jan is an ovarian, uterine, AND breast cancer survivor. In addition, that she endured almost 10 surgeries alone just to deal with the breast reconstruction issues that she encountered.
SISTERS… happy, healthy, and celebrating at my daughter's Bat Mitzvah 
November 22, 2014

As for my BRCA/Hereditary Cancer advocacy, this past year I've taken it to a new level.  Branding myself as The BRCA Responder, I use social media to disseminate BRCA/Hereditary Cancer information and education. I came up with the name The BRCA Responder because I tend to "not keep very quiet" regarding all things BRCA and Hereditary Cancer.  I tend to "respond" to online cancer articles- constantly, incessantly, passionately. Furthermore, I inherited my BRCA1 gene mutation from my Dad. When I was younger and my Dad would yell out for me to see where I was, he would always follow up by then saying, "Amy, PLEASE RESPOND!" So, Dad helped me in becoming quite the "Responder." 

It just made sense: The BRCA Responder.

Please follow me on twitter @BRCAresponder

I find twitter to be an extremely effective social media platform. It's a great way to get important information out to the world immediately, in real time. I tweet and RT the latest BRCA/HEREDITARY CANCER research, studies, stories, and more. Tweet chats are also a great way to connect with the medical community and patients. #BRCA  #bcsm #gyncsm are just some twitter hashtags providing great discussion and information. 

Every week I distribute my own online BRCA/HEREDITARY CANCER news--@BRCAresponder WEEKLY. It's an online weekly news of everything happening with BRCA/HEREDITARY CANCER. I scour the internet and all forms of social media for everything current on BRCA/HEREDITARY CANCER. There are many cancer stories out there but my goal is to include information in the news that is most relevant to the BRCA/HEREDITARY CANCER community. I include current research, studies, personal stories of hereditary breast and ovarian cancer, upcoming BRCA conferences and webinars, information on genetic counseling, genetic testing, gene patenting, and really whatever is "news" in BRCA/HIGH CANCER RISK/HEREDITARY CANCER for that particular week.  

On this, my blog, I repost weekly news and my opinions, plus anything else in the BRCA/HEREDITARY CANCER realm that I feel is especially "important" to highlight.  I view myself as a connector of the dots, a facilitator, a go-between, an ambassador of knowledge…gathering accurate BRCA/HEREDITARY CANCER information together in a cohesive way to inform others. 
The ultimate goal: saving lives. 

Social media is an excellent way to provide ongoing, immediate support to others. 
I am proud to be a Co-Administrator of the BRCA Sisterhood. Fellow advocates and friends Karen Lazarovitz and Teri Smieja started this private online Facebook group for women only. At over 4000 members, the BRCA SISTERHOOD is the largest private online Facebook group for women only that are HIGH RISK/affected by BRCA/HEREDITARY CANCER. 

The male counterpart is THE BRCA BROTHERHOOD.  
These groups provide wonderful support.

Currently, I'm most excited about the documentary film PINK & BLUE www.pinkandbluemovie.com
The official movie poster for PINK &BLUE 
Alan Blassberg, Pink & Blue director 

While on Facebook one day, I saw a post about the film and soon realized that the filmmaker Alan Blassberg and I had a mutual friend. I reached out to Alan and the rest is history--I signed on as Executive Producer.
Alan and I both carry a BRCA gene mutation (Me: BRCA1 and Alan is BRCA2) and each of us have lost too many family members to BRCA associated cancers. Alan and I soon found that we both share the same vision for education and knowledge surrounding BRCA gene mutations and Hereditary Cancer. We are both extremely passionate about providing information about the male side of things, particularly male breast cancer. Both women AND men can pass down a BRCA gene mutation to daughters AND sons. 

The Pink & Blue crew with BRCA1 positive Kelly Rothe &
 Detroit Red Wings  Jimmy Howard 
www.pinkandbluemovie.com 



We want to bring the blue out from the shadows of the "pink." This past October "PINKTOBER", as I found myself drowning in the sea of pink, I was compelled to produce a 2 minute video called "It's not just PINK" to educate the public about male breast cancer. 
PINK & BLUE Director Alan Blassberg. Blassberg, BRCA 2 positive, lost his sister Sammy and many other family members to BRCA related cancers. 
Alan is shown here getting a mammogram. 
(Blassberg wonders where are the robes with BLUE breast cancer ribbons?) 
Sammy

Blassberg was recently named one of The Jewish Daily Forward's
 "FORWARD 50" -  2014

Working with Alan on PINK AND BLUE has been beyond an amazing experience and collaboration. Increasingly people are starting to hear about BRCA gene mutations and what inheriting a BRCA gene mutation can mean for their health and their family.

Although I continue to work hard everyday, Angelina Jolie's "announcement" last year and op-ed piece in the New York Times did in one day what I couldn't even begin to achieve in my lifetime. In that one day, Jolie brought global attention to the words BRCA, BRCA mutation, and double mastectomy. Jolie brought specific awareness to those words and according to recent research also a definite increase in those seeking genetic testing.  

However, understanding issues surrounding BRCA mutations and cancer risk are complex. Breast Cancer Awareness is definitely out there--what's missing is actual Breast Cancer Education.  For example, many journalists do not "get" exactly how to address breast cancer risk in a story. I am not blaming them--hereditary cancer and cancer risk is extremely intricate. Many doctors are still uneducated on the subject. During the filming of Pink & Blue we have talked with many people who have been the ones to actually educate their own doctors on BRCA 1,2 and male breast cancer. 

Where to start with cancer risk education? A good place to start with BRCA/HEREDITARY CANCER education would be at the ground floor level--at the medical schools and with the physicians. Regular doctors (not certified genetic counselors or genetic experts) currently offering BRCA testing should also be required to pass certain cancer risk assessment requirements when they are up at their medical review board. There are so many hereditary cancer syndromes and gene mutations beyond BRCA. How does a doctor who is not a trained expert in genetics qualified to give a thorough cancer risk assessment, give one? Well, unfortunately, often times they don't. Primary care doctors are not routinely implementing or trained in evidence based decision making for genetic testing or counseling.

What I try to do in my advocacy work is to reach out to both journalists and doctors and give them a cheat sheet. This cheat sheet format works particularly well on social media. People shouldn’t panic and hide when they hear “BRCA gene” or “gene mutation”; that includes medical professionals. The work of scientist Dr. Mary Claire King proved many people wrong. King’s discovery of the BRCA1 gene and scientific research of 20 plus years has saved and will continue to save countless lives. 

Here is one simple way to see if you might want to talk with a genetic counselor. 
I also ask journalists to please use resources and reach out to a genetics expert on each cancer story that comes their way. This way, if a story seems to have a genetic component, that information will not be omitted from the piece. I have seen all too often stories where there are 3 generations affected by breast cancer and there is not one mention anywhere of genetics, genetic counseling, or genetic testing.  The reader is "aware" that this is a breast cancer story but not educated about why 3 generations have all been diagnosed with breast cancer. It becomes a missed opportunity to educate…which is ultimately a missed opportunity for true "awareness"; a missed opportunity to save lives.

I completely understand Angelina Jolie's very personal decision to have a prophylactic mastectomy. Even more, I completely get why she made her story public with an "announcement" in the New York Times . I also get why Jolie continues to be open and be public about her BRCA mutation status and risk management decisions: Empowerment and Saving lives. I think if you are a strong, independent, empowered woman like Angelina it is probably hard to keep quiet once you have received accurate genetic counseling/education about the danger of BRCA gene mutations and seen the scientific evidence.
In addition, if you are a strong, independent, empowered woman, plus a humanitarian who happens to be a global celebrity…AND in addition to the scientific evidence and genetics education you have ALSO personally experienced BRCA’s wrath (the death and devastation in your family of BRCA related cancers), I would bet you probably couldn't live with yourself if you DID NOT share the lifesaving knowledge. 

"I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options."  Angelina Jolie 


I encourage every journalist who writes an article about Angelina Jolie, to make sure they get the facts on BRCA; consult with genetics experts. If journalists do this...there will be a trickle down effect--many, many lives will be saved. 
So, everything on Angelina Jolie--I completely get it. I do what I do because in part, I could not live with myself if I remained quiet. Sitting on this gold nugget of lifesaving knowledge, I am compelled to stand up and speak out often sharing my own BRCA story regularly. Most recently I shared my BRCA story at a cancer genetics “lunch & learn” at Jupiter Medical Center.
Sharing my BRCA story at Jupiter Medical Center  Oct. 2014

PINK & BLUE director Alan Blassberg has such a unique vision for storytelling that while Angelina made us BRCA "aware", PINK & BLUE will continue on and provide BRCA "education."  Blassberg and I have already filmed interviews from world renowned breast surgeons, oncologists, genetics experts, plus many stories illustrating the complicated decision making process surrounding BRCA and cancer risk management. I am certain PINK & BLUE will enlighten people on BRCA/HEREDITARY CANCER with storytelling, education, and science. Cancer doesn’t have a set path. Everyone has a different journey. PINK & BLUE really looks at the personal decisions people make. There is no right or wrong in all of this. Jolie’s Op Ed demonstrated that. Every decision around BRCA/HEREDITARY CANCER is highly personal and highly patient specific. What is right for one person may not be right for another. 


My big hope is that research on BRCA/HEREDITARY CANCER will allow future generations to have less invasive cancer risk management options to them.  Selfishly, I want this for my young son and teenage daughter who each have a 50/50 chance of inheriting my same BRCA1 gene mutation. 

There needs to be a HUGE SHIFT from "awareness" to "education"--from the ground floor at the medical schools, to the media, to the general community, all the way up to the NFL

My focus on PINK & BLUE, my daily advocacy, and daily family life has delayed the release of my BRCA memoir "Resurrection Lily." However, my memoir WILL be out in 2015 shortly after the release of PINK & BLUE. Stay tuned for both. I will surely be blogging and tweeting constantly, incessantly, and passionately about both releases. 

Amy Byer Shainman
The BRCA Responder  twitter.com/brcaresponder  @BRCAresponder
BRCA HEREDITARY CANCER HEALTH ADVOCATE, BRCA1 Positive Previvor
@BRCAresponder WEEKLY: http://storify.com/BRCAresponder

Wednesday, October 22, 2014

PARTICIPANTS NEEDED FOR RESEARCH STUDY ON PROPHYLACTIC MASTECTOMY

I will be participating in this study. The researcher needs 5 more volunteer participants. The purpose of this study is to examine the experiences of six women who have undergone prophylactic mastectomy to gather firsthand experiences to assist newly diagnosed women with information upon to guide their decisions. Amy Byer Shainman @BRCAresponder

REQUIREMENTS: 
*Must be a previvor, assessed as high risk, family cluster, or BRCA positive.
*Has had Prophylactic mastectomy for the purpose of reducing life long risk of breast cancer. 
*Researcher prefers participant that resides in South Florida.


Department of Educational Leadership Florida Atlantic University

PARTICIPANTS NEEDED FOR RESEARCH ON PROPHYLACTIC MASTECTOMY

We are looking for volunteers to take part in a study of
Prophylactic Mastectomy.
As a participant in this study, your participation will involve one face to face meeting (OR SKYPE meeting) of about 60 minutes of your time and a follow up e-mail.  
In appreciation for your time, you will receive:
The sincere appreciation of the researchers and beneficiaries of your experience.
For more information about this study, or to volunteer for this study. 


Please contact: Faith Gordon

Department of Educational Leadership

Florida Atlantic University
561-310-0634
Email: faithgordon121@hotmail.com

---------------------------------------------------------------------------------
ADULT CONSENT FORM
1) Title of Research: Transformational Learning and Self Efficacy:  An Investigation into their Role in Prophylactic Mastectomy
2) Investigator (s): PI: Dr. Valerie Bryan/Co-PI: Faith E. Gordon
3) Purpose: For all women it is important to be informed regarding all current treatment options that are available to prevent breast cancer.  For women in high-risk categories of breast cancer it is even more important that they are informed. The purpose of this study is to examine the experiences of six women who have undergone prophylactic mastectomy to gather firsthand experiences to assist newly diagnosed women with information upon to guide their decisions.  Information gathered from this study will add to the body of knowledge to assist newly diagnosed women to make informed decisions regarding their health care.  Further, this information will inform health care providers of the patient’s perspective, enabling them to provide improved patient centered health care, and finally this information will assist educators and curriculum developers to create and improve programs and protocols to assist women through this process.  
The research will include investigation through the stages of (a) diagnosis, (b) information gathering and option discovery, (c) decision-making (d) surgeries, (e) healing and recovery.  The focus of this study will be on transformational learning and self-efficacy.  
4) Procedures: This study has six participants.  All are adult women between the ages of 18 and 90.  All have been diagnosed at high-risk of breast cancer and have undergone prophylactic mastectomy.  This research has three data collection methods.  The first is a guided open-ended interview.  The second is a brief survey on self-efficacy, and the third is your autobiography.  You are asked to participate in a guided 60 minute interview and complete a brief survey.  This interview will be audio recorded.  When the interview is complete it will be e-mailed to the transcriber. Any and all identifiers will be removed.  The transcript will be e-mailed back to me and I will e-mail a copy to you.  If you wish to make any additions or changes, please do so and return it to me at: faithgordon121@hotmail.com within five days.  By participating in this research you grant permission for the researcher to use direct quotations from your interview, anonymously without identifying information in the final research product.  The information is for dissertation use. 
Your participation is voluntary; refusal to participate will involve no penalty or loss of benefits to which you might otherwise be entitle, and you may discontinue participation at any time without penalty or loss of benefits to which you are otherwise entitled. 
5) Risks: You will be asked to recall and talk about feelings and memories that may be associated with powerful emotions.  This may be uncomfortable or disorienting. If, as a part of this study you experience psychological discomfort or stress there will be psychological counseling available at (866) 288-7475.  In addition, you have a right to discontinue participation at any time of unanticipated stress occurs.   

Initials_____

6) Benefits: We do not know if you will receive any direct benefits by taking part in this study.   However, this research will contribute to a greater understanding of the role of adult and transformational learning and self-efficacy play in the proactive health care choice of undertaking prophylactic mastectomy.  Knowledge gained will provide newly diagnosed women with information to help them make informed decisions.  It may also assist health care providers and educators to improve protocols, training, and curriculum development.
7) Data Storage:
Any information collected about you will be kept confidential and secure and only the people working with the study will see your data, unless required by law.  You and any individuals named will be given pseudonyms.  Locations will be general and organizations will be given generic names.  Data will be kept for 2 years in a locked file drawer and on a password-protected computer in the researcher’s home office.  After 2 years paper copies will be destroyed by shredding and electronic data will be deleted.  We may publish what we learn from this study.  If we do, we will not let anyone know your name/identify unless you give us permission.
8) Contact Information:
  • If you have questions about the study, you should call the principal investigator(s) Dr. Valerie Bryan at (561) 799-8639.
  • In you have questions about your rights as a research participant, or experience problems, contact the Florida Atlantic University Division of Research at (561) 297-0777 or send an e-mail to fau.research@fau.edu
9) Consent Statement:
*I have read or had read to me the preceding information describing this study.  All my questions have been answered to my satisfaction.  I am 18 years or older and freely consent to participate.  I understand that I am free to withdraw from the study at any time without penalty.  I have received a copy of this consent form.
I agree ________     I do not agree ___________ to be audiotaped/videotaped.
I agree _________ I do not agree ____________ to use my direct quotes for this research. 
Signature of Participant:  __________________________ Date_________________
Printed Name of Participant:  First Name _______________ Last Name __________
Signature of Co-Investigator: __________________________ Date _________________



Thursday, October 16, 2014

ADVOCATING FOR LIFE

An advocate for genetic counseling/testing, Amy knew she couldn't remain silent when she had the power to affect so many lives, and believes Angelina Jolie sharing her experience has created much needed public awareness.

FULL ARTICLE: http://www.tcpalm.com/niche/jupiter-courier-newsweekly/advocating-for-life_53237240