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

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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 _________________

ADVOCATING FOR LIFE

"An advocate for genetic counseling/testing, she 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

It's not just PINK

Honoring Lillian

Today marks the 80th anniversary of my grandmother Lillian's death. It is Lillian's Yahrzeit. A Yahrzeit (Yiddish for "a year's time") is the anniversary of the death of a loved one. 
More on Yahrzeit  

Lillian died on September 23, 1934. 
She was 33 years old. 
My Dad was only 7 years old at the time.

The first thing I saw on my computer this morning was this story:  The story of Kristi Szekely.  A story similar to my own. Kristi inherited her BRCA1 gene mutation from her father who had inherited it from his mother. Kristi's grandmother was also in her early 30's when she passed from both breast and ovarian cancer. 

So today, seeing that very similar BRCA1 story, Lillian was sweetly nudging me again--like she so often does. Not only to remind me we are related by DNA, but also by heart and spirit. Over the years I have felt Lillian's pull, guidance, warnings, & love. We may not have a traditional grandmother/granddaughter relationship -- one where I can hop up on her lap, share lunch, or spend the afternoon playing cards or going shopping. However, our kinship and connection is undeniable. 

“Make my death mean something Amy, use your voice, press forward Amy, share, it’s the right thing to do.”

And so today, I honor you Lillian, by lighting a Yahrzeit candle, writing this post, and continuing to share my story. Our story.

www.nsgc.org to find a genetic counselor near you.

Portion taken from my BRCA memoir: Resurrection Lily which has taken me longer to complete and a lot harder to write than I ever anticipated.     I am taking the lead from Lillian, she has just a bit more she wants me to include. I will keep you posted on its release.

Amy Byer Shainman
@BRCAresponder 

SEPTEMBER 16th-Potentially Fatal Fat & Tissue Removal Day

September 16th on my calendar is my very own

holiday. 

"Potentially Fatal Fat and Tissue Removal Day"

September 16, 2010 - The day I had potentially fatal 

fat and tissue removed from my chest ; a nipple-

sparing, skin sparing bilateral prophylactic 

mastectomy with reconstruction. Exactly 12 years 

prior to this date, on September 16, 1998, 

I had a potentially fatal fat & tissue tumor 

removed 

from my brain (I was previously diagnosed with an 

acoustic neuroma, a brain tumor). This previous 

diagnosis and major brain tumor surgery factored 

heavily into my decision making process to move forward with 

prophylactic breast surgery.

Taken from my BRCA memoir "Resurrection Lily" which has taken me way longer to write than I ever anticipated! 
I will keep you posted on my progress and its release.
Amy @BRCAresponder 

UNIVERSAL BRCA TESTING?

Scientist Mary Claire King has recommended wider population/universal testing testing for BRCA. There has been an onslaught of articles responding to this recommendation. Here is my comment from: "Here's Something You Don't Want To Know About Your Risk Of Breast Cancer" which expresses my opinion on the subject.  @BRCAresponder

@Forbes http://onforb.es/1qGb2Ke

Steven, 

Thank you for your article–as I applaud anything that starts a conversation on BRCA/Hereditary cancer.   

I am going to rewrite the article below and address 

the specifics.

“But her proposed new universal testing policy, which fellow Forbes contributor David Shaywitz calls “audacious,” goes far beyond what other experts recommend. Earlier this year, the highly regarded U.S. Preventative Services Task Force (USPSTF) recommended testing BRCA genes only in women with a family history of breast or ovarian cancer.”
@BRCAresponder says:—–The USPSTF confuses genetic counseling and genetic testing. What about very small families with limited health knowledge, or what happens when the gene is passed down via the paternal side, and the father only has brothers? What if there is simply a history of a few male cancers?“Although there’s no question that King is an expert on BRCA gene testing, I think she’s gone much too far with her latest proposal. She has the science right, but she is far too optimistic about how her recommendation would actually play out. The policy might save some lives, but it would also cause a great deal of pain.”
@BRCAresponder says:——-I am BRCA Advocate in the trenches hearing genetic counseling and genetic testing stories first hand. I hear countless stories via those with family cancer history that are told “not to worry about anything”. I personally have two friends who were BRCA tested via regular ob/gyn and their tests were misinterpreted. They were told they were BRCA negative when they were in fact BRCA positive. One didn’t know it but she already had ovarian cancer: http://stacybrcastory.eventbrite.com  I am so afraid of how many more stories like this are out there; I know they are. Yes, agreed, Dr. King may be optimistic about how her recommendation would play out. Where things stand now, MD’s/regular physicians in general don’t have the adequate cancer genetics/risk assessment training. Nor do they even have the TIME to complete a thorough cancer risk assessment within the timeframe of a regular exam. Can you clarify what you mean by “this would cause a great deal of pain”?“First, it’s worth explaining why King thinks universal BRCA testing is a good idea. In her JAMA article, King and colleagues describe a new study they conducted in Ashkenazi Jews that showed, somewhat surprisingly, that “50% of families found to harbor BRCA1 or BRCA2 mutations had no history of breast or ovarian cancer that would have triggered clinical attention.”In other words, under current policy guidelines, 50% of people who have a damaging mutation in one of these genes will not have their genes tested. Many of them will eventually get breast or ovarian cancer—as King explains, women with harmful BRCA1 mutations have a 60% risk of cancer by age 60, and for BRCA2 the risk is 33% by age 60. That’s a very high risk, though it’s important to keep in mind that many women with these mutations will never get cancer.”
@BRCAresponder says: —- I’m curious if there is a study you can site that shows who and who doesn’t get cancer? BRCA is very dangerous. Most BRCA positive women I know have lengthy family cancer histories. When you couple carrying a BRCA1 mutation w/a lengthy family history pattern of breast and ovarian cancer–including many diagnosis’ and deaths at young ages–when you say “most of these women will never get cancer” escaping cancer doesn’t typically register as “feasible” on a BRCA positive gal’s radar.“With modern DNA sequencing technology, any large-scale genetic BRCA testing program is likely to uncover thousands of mutations that have no harmful effects, and thousands more whose effects are simply unknown. (Aside: each BRCA gene spans about 80-90 thousand nucleotides of DNA, and each of those letters can mutate in 4 ways, changing into one of the other 3 bases or just being deleted. This means there are at least 400,000 mutations possible in each gene, not counting larger deletions. A colleague and I published an article in 2010 describing one such BRCA test.) King is clearly aware that such reporting these mutations to patients would only sow confusion, and she recommends that:“Testing for BRCA1 and BRCA2 should focus solely on unambiguously loss-of-function mutations with definitive effect on cancer risk…. A VUS [variant of unknown significance] can increase confusion and compromise clinical management; for population-based screening, these variants should not be reported.”Herein lies one of the biggest problems with King’s idea. We don’t have universal agreement on which mutations have no significance, and even if we did, most physicians are not experts on cancer genetics. In our lawsuit-prone medical culture, there exists an unfortunate tendency to over-treat and over-report everything.”
@BRCAresponder—-I agree with you here that most physicians are not experts on cancer genetics. In addition, I would add, physicians are not trained to do thorough cancer genetic risk assessments and should not be providing genetic testing at all. They don’t know what to test for (there are many hereditary cancer syndromes besides BRCA.) Most importantly, I have seen first hand that they clearly don’t know how to interpret tests. Dr. King may be optimistic because she is not in the BRCA trenches; not seeing that the current testing/counseling standards need to first be improved dramatically.“Thus I fear that if we had wider BRCA testing, clinical labs would report all mutations back to physicians (how could they not?), and physicians in turn would report everything to the patients. The result would be that millions of women would be told “you have a mutation in BRCA1, and we don’t know what it means.” What’s a patient supposed to do with that?”
@BRCAresponder says—or physicians would even interpret tests incorrectly, as I have seen. For wider genetic testing to happen, a major PROTOCOL change would have to be in place. Physicians would have to be TRAINED in CANCER RISK ASSESSMENT. When results come in (negative or positive), the physician would THEN BE REQUIRED to refer patient to a high risk oncologist for “what to do”. A person can be BRCA negative and still be HIGH RISK. It’s all VERY INTRICATE.“The other problem is that the only treatment to prevent breast and ovarian cancer is surgery to remove a woman’s breasts and ovaries. We don’t have a pill you can take, or lifestyle changes you can adopt, that will dramatically reduce your risk of hereditary cancer. But unlike a cancer diagnosis, the discovery of a BRCA mutation does not mean you have cancer. It simply means you have a risk, possibly a high risk, of getting cancer at a young age. We know from decades of research that people are not very good at evaluating risk. We tend to over-estimate the danger of events that seem very dramatic or visible to us, as cancer is to many people.”
@BRCAresponder says — BRCA is dangerous. That cannot be disputed. When one has a BRCA mutation they are not overestimating. The danger and the cancer risk is real. When it comes to BRCA mutations, knowledge is power and that knowledge may just save your life. The knowledge saved mine.“By King’s own estimates, widespread BRCA testing would detect cancer-causing mutations in 250,000 to 415,000 women in the U.S. This estimate assumes the test doesn’t have false positives, which it almost certainly would. All of these women would then be faced with an extremely difficult dilemma: should they have both their breasts removed, or live the rest of their lives in fear of breast cancer?”
@BRCAresponder says–this is why GENETIC COUNSELING IS KEY in the GENETIC TESTING EQUATION.“This dilemma was famously on display last year, when actress Angelina Jolie revealed in a New York Times article that she’d had a double mastectomy, after discovering that she carried high-risk BRCA mutations. Jolie’s mother died from cancer at the age of 56, and she explained in her article that as a result of the surgery, “ I can tell my children that they don’t need to fear they will lose me to breast cancer.”“King’s proposal is audacious, and it’s well worth debating. But without a better treatment option, telling hundreds of thousands of women that they have a high risk of breast and ovarian cancer carries a potentially enormous cost, both physical and emotional, for these women. Rather than putting huge numbers of women under the surgeon’s knife, we should instead double or triple our investments in research on treatments that may eventually make surgery unnecessary.”
@BRCAresponder says—For a BRCA positive woman, prophylactic surgeries (or as you call it -going under the knife) is currently a BRCA gal’s best chance for a "cure". Currently, it is our best option to drastically reduce our cancer risk and our best chance to remain breathing. Yes, I agree we should double or triple our investments in research on treatments that may eventually make surgery unnecessary. Currently, BASSER CENTER for BRCA at the University of Pennsylvania is currently working hard to find better options for BRCA mutation carriers. I certainly want my children and future generations to have less invasive cancer risk reducing options available to them.

Respectfully,

Amy Byer Shainman
BRCA/HEREDITARY CANCER advocate
BRCA 1 positive previvor @BRCAresponder
Executive Producer: Pink & Blue www.pinkandbluemovie.com
MY STORY: http://amybrcastory.eventbrite.com

South Florida Study RECRUITING PARTICIPANTS

UPDATE 11/10/14 This study still needs participants. I am participating in this study. If you live in the South Florida area, please consider particpating too. Extra perk is that these tests would cost you $400--in the study they are free!
Thank you! Amy Byer Shainman @BRCAresponder


STUDY
Effect of oophorectomy on younger women

Florida Atlantic University’s department of Exercise Science & Health Promotion is currently studying the effect of oophorectomy in younger women.  Many breast and/or ovarian cancer patients have a bilateral oophorectomy as a result of cancer treatments and more and more “previvors” are also electing to have a bilateral oophorectomy to reduce their risk of disease.  But no one really knows how younger organs and muscles are affected by early menopause.  FAU researchers are looking at both cardiovascular and metabolic responses to help develop exercise and nutrition plans targeted to these empowered women who care about their health and longevity.  For more information, contact graduate researcher and cancer survivor Liz Pittinger at (954) 234-4937 or epitting@fau.edu.   

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