Our Voices: A Blog by Links, Callers and Volunteers

Why I Ran: A Team Sharsheret Athlete’s Story

As all greDevorah Katzat adventures do, this one started on Facebook and a post by Rochelle Shoretz, the Founder of Sharsheret, about running the NYC Half Marathon. In an instant, when some of the best decisions are made, I hopped on the band wagon and said, “I should run in honor of my 40th birthday.” And there began a journey so powerful it will move me for years to come.

Sharsheret stands for so many things: strength, determination, happiness, sadness, loss, education, advancement, belief, and friendship. In all of that, we cannot forget that Sharsheret literally means chain or link. Apropos, that while I am not a survivor of or battling breast cancer, every single one of the mentioned attributes of Sharsheret applies to me. It all felt right, from creating a page to raise money for a cause so dear to my heart to crossing the finish line into the arms of my silent mentor and a woman who means so much to me and stands for the very strength we all encompass, yet do not all tap into.

There I was Sunday morning, freezing just a little and alone in my corral. The beauty and tranquility of New York City’s Central Park, even surrounded by 25,000 runners, was overwhelming, and the tears flowed. I was a week from turning 40. I had overcome many obstacles in my life and lost close to 100 pounds. I had shed a belittling shell that had overshadowed my whole sense of self and I was about to run 13.1 miles. That’s right: 8 months ago I could not walk up a hill and now I was dressed head to toe in pink, representing breast cancer survivors and those who have yet to learn of their battle.  And I was going to do it, determined to outrun the sweeper bus.

Not prepared for what came next is an understatement. Mile one, mile two, mile six and a promise of coming out of Central Park and on to flat terrain. As I entered mile 12 - and believe me when I tell you that my legs were back at mile 4 - I had a new power on my side: Belief, the belief that no matter what happened, I would cross the finish line. I would cross the line not just for me, although this will always be one of my greatest achievements. I completed sore and exhausted in 3 hours and 16 minutes for Team Sharsheret. I was a part of something bigger than me, more intense than I can fully comprehend and it will remain one of the proudest days of my life.

To join Team Sharsheret for the 2014 NYC Marathon on Sunday, November 2nd, visit: http://bit.ly/1g0NLI0.

Genetic Counseling and Testing: The Insurance Dilemma

‘Will my insurance cover genetic counseling and testing? What do I do if coverage is denied?’
Boy, if I had a penny for every time I heard these questions…

It is well established that 1 in 40 individuals of Ashkenazi Jewish ancestry carries a BRCA mutation, predisposing them to breast cancer and ovarian cancer. When I speak with the women and families of Sharsheret about their family history of cancer, one of their most common concerns is insurance coverage of genetic counseling and testing. Insurance coverage and financial considerations are a valid concern for many women, and simply a reality in today’s day and age.

Most insurance companies set their criteria for coverage based on various established medical recommendations for who should have genetic testing. These criteria are designed to ensure that only those with a “strong” family history or those for whom genetic testing is appropriate are covered. However, it can be frustrating, especially as an Ashkenazi Jewish individual with increased risk, to be denied coverage. Genetic counseling itself is typically covered and billed as a medical office visit, however every center bills for genetic counseling services differently. If you are unsure, I recommend checking with the genetic counselor you meet with and your insurance company to ensure that counseling services are covered. Coverage of genetic testing, however, varies. Every insurance company, including Medicare, has its own criteria and will vary from person to person based on their personal and family cancer history. Additionally, coverage of genetic testing will likely change over time due to new health care laws. Each situation is truly unique, and so it may not always be possible to know before one meets with a genetic counselor if testing will be covered.

However, clinical cancer genetic counselors can assist you with the insurance coverage process. Genetic counselors working in a hospital or medical center setting can assist you with appealing for coverage or working with the laboratory (some have financial assistance programs, although not all.) The genetic testing process can be complex and it is important to meet with a genetic counselor who has the experience and knowledge to handle these concerns.

We welcome anyone with questions about genetic counseling or testing, or their family history, to contact our clinical team at 866.474.2774 for free, individualized support as part of our Genetics for Life program.

Wall Street Journal Article Highlights Commission on Cancer’s Call for Survivorship Care Programs

An article published yesterday in the Wall Street Journal highlights cancer survivorship care programs, not only as an emerging trend in the medical field, but as an essential accreditation standard for U.S. cancer centers by 2015, according to the Commission on Cancer.  With an increase of early detection and advances in treatment options, more and more people are living longer after a cancer diagnosis.  As noted in the article, the National Cancer Institute indicates that there will be 18 million cancer survivors living in the United States by 2022.

This article reinforces our notion that women need support throughout their cancer journey, from before diagnosis, during treatment, and through survivorship. Recognizing the need for the development of survivorship care programs, the Centers for Disease Control and Prevention awarded Sharsheret a grant in 2011 to launch Thriving Again, a comprehensive survivorship program for young Jewish breast cancer survivors. We were able to draw from over a decade of our experience working with young Jewish women facing breast cancer and develop a culturally-appropriate program that touches upon the entire spectrum of issues and concerns that cancer survivors can face, even years after treatment has ended. Sharsheret’s survivorship program offers free survivorship kits which address both the medical and psychosocial needs of cancer survivors through informational resources, and action-based tools such as a healthy living cookbook and fitness DVD.

The program also offers a customized survivorship care plan.  In addition to the survivorship kit, members of our clinical staff work directly with each survivor to develop their own personalized survivorship care plan.  As indicated in the article, after months of treatment, many survivors can feel overwhelmed and isolated during their transition into survivorship. Sharsheret’s care plans, designed to be completed with a health care professional, can be used as a tool to help organize each woman’s survivorship journey and allows them to focus on living a healthy, fulfilling life.

Click here to order your free survivorship kit and to learn more about our Thriving Again program for breast cancer survivors, or call us toll-free at 866.474.2774 or email info@sharsheret.org.

New York Times Article Addresses Key Genetics Questions For Jewish Women

Today’s New York Times article outlining a proposed population-wide BRCA screening program in Israel notes Sharsheret’s work in genetics as part of a “campaign to raise awareness about the genetic susceptibility to breast and ovarian cancer among Ashkenazi Jews.”  Why have we undertaken to raise awareness about BRCA mutations as part of our Genetics for Life program?  This statistic speaks for itself: One in forty individuals of Ashkenazi Jewish ancestry carries a BRCA mutation, greatly predisposing Jewish families to breast cancer, ovarian cancer, and related cancers.

The idea of a population-wide screening program for every Ashkenazi Jew has been discussed recently in the American medical community, but more recently in the Israeli medical community as well. As the article notes, many advocate for this type of public health program because of its potential to save lives. Alternatively, many are opposed because of the psychosocial concerns such a screening program could provoke.

Opinions aside, as a genetic counselor who works with Jewish families at increased risk for hereditary breast cancer and ovarian cancer, I know firsthand that family communication and the psychosocial implications of genetic testing can be emotionally charged. The discussion between Tamar Modiano and her daughters referenced in the article about the timing and implications of genetic testing is a common one. This is why genetic counseling is vital. Genetic testing and interpretation is complex, and the information does not stand in a vacuum.  It can affect individuals and families in a comprehensive way - medically, psychosocially, and financially.  
 
As we approach the holidays of Chanukah and Thanksgiving, consider using this time with family to “Have the Talk” about medical history with your loved ones.  I welcome anyone with questions about genetic counseling or testing, or their family history, to contact Sharsheret for free, individualized support as part of our Genetics for Life program.  The program includes a confidential hotline, family conference calls, a peer support network to connect women one-on-one with others who are at increased risk for hereditary breast cancer and ovarian cancer, and health seminars presented nationwide to educate women and men about the importance of understanding family medical history as it relates to their own health. For more information and a copy of our booklet, “Your Jewish Genes: Hereditary Breast Cancer and Ovarian Cancer,” please call us toll-free at 866.474.2774 or live chat with us online at www.sharsheret.org.

Because Of…

In the year 175 B.C.E., it was forbidden to practice Judaism openly.  The Jewish people went to great lengths to secretly perform rituals, often times hidden in caves. People did not speak openly about their Jewish identities, that is, until a small militia of Maccabees stood up and fought the Greek army and won.  That’s the two sentence history of Chanukah.
 
Because of the example set by the Maccabees, we are long removed from the caves and openly perform the rituals.  We light our menorahs in the front windows of our homes.  There are public lightings all across the country.  There is tremendous media coverage of the holiday of Chanukah.  Because of the strength of courageous and caring people, the course of history has changed and we can stand up and let our voices be heard.
 
Now for another short history lesson….For generations, it was taboo to talk about cancer in the Jewish community.  Family members did not openly share their medical histories with one another.  People went to great lengths to hide their diagnoses.  It took remarkable efforts to undergo surgery and treatment undetected by the larger community.  People were worried about the repercussions of speaking openly about a cancer diagnosis or increased genetic risk of being diagnosed with cancer.
 
Because of Sharsheret Jewish women and their families who are affected by a cancer diagnosis now have a community that offers personalized support from other women further down the road who understand what they may be going through.
 
Because of Sharsheret the Jewish community has access to vital information about hereditary breast and ovarian cancers.  We hear from many women who engage in open dialogue with their loved ones about their increased family risks.
 
Because of Sharsheret the media is talking about the increased risk of carrying the BRCA mutation in individuals of Ashkenazi Jewish descent.  Sharsheret has often been featured in the media shining a spotlight on the unique issues of young Jewish women facing cancer.
 
Because of Sharsheret women and men, teens and adults, are raising their voices and engaging in conversations and participating in events that empower us as a community to take action and protect our future.

And once again…Because of the strength of courageous and caring people, the course of history has changed and we can stand up and let our voices be heard.

Get Ready For Giving Tuesday!

“Because of Sharsheret, a woman living with a rare form of hereditary breast cancer finds a new friend who shares her concerns about talking to her teenage daughters.  Because of Sharsheret, a doctor connects his patients with resources that speak to her concerns as a Jewish woman.  Because of Sharsheret, a research scientist prepares to study the impact of cancer among Jews of Ashkenazi descent.  And because of Sharsheret, a student on campus discovers his family’s strong history of cancer and decides to take action.” – Excerpt From “Because Of Sharsheret” Impact Report.

Giving Tuesday, an annual day for giving back and sharing the ways you give, is just two weeks away - Tuesday, December 3rd!  We’re celebrating Giving Tuesday by sharing the ways that Sharsheret’s work has impacted the Jewish and cancer communities.  The above excerpt from our new Impact Report highlights some of the ways that Sharsheret has shaped a field of culturally-relevant training and resources, enhanced the quality of life of those facing serious illness, opened up vital conversations about cancer that were once deemed taboo, and inspired community-wide and national action.

On Tuesday, December 3rd, we will share the entire Impact Report with you – our clients and our friends.  Your continued and generous support enables us to accomplish all that we have.  We know that you, too, will take pride in all that has changed because of Sharsheret…because of you.

Join our Giving Tuesday campaign and share how Sharsheret has made a difference in your life and what you plan to do to give back in the comments section below, on our Facebook page, or on Twitter using the hashtag #becauseofsharsheret.

Running For All the Mommies

There are certain moments in life that you can forever replay in your mind as if they just happened. One of these was the moment I found out my mother had cancer. I was nine years old and until then the only knowledge I had of the word “cancer” was from family members who had lost their battles. So many memories started in that one moment and spanned over the next few years including chemo visits, surgeries and the night my mom shaved her head. From that one moment grew a feeling that existed in my house during the time my mother was ill – a feeling that was present while she fought each battle and won the war to become the first survivor in our family.

My mother was 33 years old when she was diagnosed with breast cancer. At the time, I was nine, my brother was three and my sister was one. Although I had some understanding of what was going on, my siblings were too young to comprehend why mommy couldn’t do certain things. We were a very young family whose time was filled with school, learning to walk and planning an upsherin (Jewish haircutting ceremony). But each day, no matter how sick or sore my mother felt, she showered, put on clothes and make-up and was ready to greet us when we came home from school. She talked to me about my day and sat at the dinner table. I think it was only years later as a teen looking at an old picture that it really dawned on me how sick my mother had been. Back then there was no Sharsheret to connect with peers going through what we were going through or help families talk to their children about breast cancer. When I learned about Sharsheret, my first thought was “Wow, these survivors and families have each other! What a gift.”

When I found the “Run Like A Diva 5K Race” I decided to do it with Team Sharsheret. I wanted to do it for all the kids who are trying to understand what their mommies are going through and for all the mommies who are showering and putting on make-up before their kids get home.

As always we plan and Gd laughs. About a month into my training I found out I was pregnant. I thought “I've never even run 3 miles so how am I going to do it 5 months pregnant?” Then I just laughed at myself. If the whole point of doing this run was to honor my mother's strength and that of other survivors there was NO WAY I was not going to do a simple 3 mile run.

So on November 3rd, one week after the 20th anniversary of my mother's mastectomy, I ran 3 miles as the mother of three children and five months pregnant with my fourth. I raised $1,400 for Sharsheret in honor of everyone affected by breast cancer but especially my mother who never let us know how sick she really was and taught me what it means to be a survivor. I am proud to support Sharsheret who makes it possible to no longer have to fight the war alone.

Meet Our Athletes

Meet our incredible Team Sharsheret athletes who will be running the ING NYC Marathon on Sunday.  Click on each athlete’s name to read their stories and find out why they joined Team Sharsheret!

Jonathan Blinken
Sarah Feit
Steven Gottlieb
Daniella Kohlhagen
Ilana Milstein
Eve Merrill
Tammie Purow
Beri Schwitzer
Mark Segall
Renana Silverman
Alain Spira
Jamie Tadelis
Andrew Wigod

Update from the National Society of Genetic Counselors Conference

Cancer gene panels were a hot topic at the recent National Society of Genetic Counselors conference in Anaheim, California. The annual educational conference is a chance for genetic counselors to learn about the latest developments in the field, discuss these developments as they relate to genetic counseling, how they affect our patients, and how they are integrated into clinical practice

Sharsheret Site Visit and Launch of Financial Wellness Tool Kit

The Jewish Women’s Foundation of New York (JWFNY) visit to Sharsheret headquarters the other day just impressed us all.   We were there to learn about the latest and greatest idea coming out of this amazing organization, the Financial Wellness Took Kit, which is funded by the Jewish Women’s Foundation of New York. After the tour, after meeting the staff behind the scenes, after visiting their impressive wall of awards and the empty wall on reserve for future awards, we went into a conference room to talk about the details.

The Financial Wellness Tool Kit was borne out of a roundtable discussion about women taking control of their financial health during and after a health crisis.  As Sharsheret researched how to go about handling this for its community, it realized the following:  women want to know about how to handle their financial information right away, at the start of the diagnosis.  They need a place to keep it—staying organized is crucial to staying on top of this.  And lastly, they need all the information in one place—a one stop shop.

In the tool kit, you will find compartments for health insurance, disability insurance, financial planning, estate planning, and resources.  The truth is that this tool kit and its financial wellness planner could and, arguably, should be used by any and all of us as we age and need to plan for a future.

It is always inspirational to see Rochelle Shoretz and her devoted staff.  And as part of the Jewish Women’s Foundation of New York, we are doubly proud that we have helped fund this new and necessary tool kit.  But the truth is, Jewish women all over can be part of this—by telling friends, by getting educated on campuses, by using the tool kit.  Sharsheret once again meets a need for all Jewish women.  We thank you and know that this new year is better because of Sharsheret and the work they do.