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Inspiring, brave, passionate. All words one can use to describe the women and caregivers I met at the Ovarian Cancer National Alliance Conference in Washington, D.C. this July. One such woman is Carey, a Sharsheret peer supporter and founder of Teal Toes, an ovarian cancer organization that encourages groups to paint their nails teal to spread awareness about ovarian cancer. Women like Carey know that the first step in the fight against ovarian cancer is a simple one: talk about it. Over 20,000 women are diagnosed with ovarian cancer each year, according to the National Cancer Institute, and many cases are not diagnosed until later stages of the disease. Regular screenings for ovarian cancer are uncommon, and the signs and symptoms of ovarian cancer, such as back pain, bloating, and feeling full too quickly after eating, can be often overlooked.
Individually, knowing the signs and symptoms will allow us to be proactive about our health. As a group, discussing ovarian cancer on major public health and advocacy stages can lead to earlier detection and treatment advances. 1 in 40 Ashkenazi Jews carries a BRCA mutation, and women with a BRCA gene mutation have 40% – 60% lifetime risk of developing ovarian cancer, making discussions about ovarian cancer even more important in our community.
As the summer begins to wind down, we are busy preparing for National Ovarian Cancer Awareness Month in September. September is the perfect time for you and your family to have conversations about your risk, and to raise awareness. Click here to order Sharsheret’s free educational resources about ovarian cancer to share with others, or call 866.474.2774 to learn more about our Ovarian Cancer Program and ways to get involved at Sharsheret.
It’s true when they say time flies when you’re having fun.
This summer I had the privilege of interning at Sharsheret. I cannot believe that it has already been nine weeks, and my time at Sharsheret is almost over!
When I first heard about Sharsheret, I did not understand how breast and ovarian cancer were Jewish concerns. I did not understand genetic risk or culturally relevant support. However, over the past nine weeks, I have watched Sharsheret staff with inspiration as they provided individualized support to callers, matched peer supporters, worked with healthcare professionals to provide culturally relevant support to patients, worked on national outreach programs, attended conferences, organized teleconferences, webinars, and medical symposia as resources for survivors and tools to educate others about the most up to date cancer research, and worked with athletes and volunteers to raise awareness about Sharsheret’s mission.
Sharsheret is an extremely welcoming place. I remember how nervous I was my first day as an intern. However, Sharsheret staff went out of their way to make me feel welcome as a member of their team, even on my first day. The passion, dedication, and kindness of Sharsheret staff is contagious, as one cannot help but smile in awe when walking into the Sharsheret office. The office is always bustling with volunteers, students, and staff. The phone is constantly ringing in the clinical office, and the fulfillment center is always bustling with activity as Thriving Again kits, Busy Boxes, and Best Face Forward kits are being sent out to women.
Each day I am more and more amazed by Sharsheret. The callers, the volunteers, the impact, and the energy the organization has is unmatchable. But I am most inspired by the women. The links that keep Sharsheret’s chain growing. The women who debate undergoing genetic testing. The mother newly diagnosed who is already looking to serve as a resource for others. The wife who just finished her first round of chemo. Women at all different stages in their cancer journeys, diagnosed at various stages. The woman who called Sharsheret right before surgery to thank us for our support. We must thank these women for their bravery, courage, and constant inspiration because without them Sharsheret would not exist.
As I near the end of my time at Sharsheret, I want to thank all the women, volunteers, staff, and Sharsheret supporters that help make Sharsheret the incredible organization that it is. I am sad to be leaving, but I look forward to continuing to support Sharsheret and spreading the word about this amazing organization!
A study presented this week at the 2014 American Society of Clinical Oncology (ASCO) Annual Meeting suggests that in younger women with early stage estrogen-receptor positive (ER+) breast cancer, obesity is associated with poorer outcomes. The research comes from a review of 70 clinical drug trials enrolling 80,000 women. It further supports an increasing body of data suggesting worse overall outcomes related to breast cancer for women who are overweight or obese compared with women who stay at a healthy weight.
About two-thirds of all breast cancers are hormone receptor positive, meaning estrogen and/or progesterone fuel their growth. Fat cells help make and store hormones including estrogen. Therefore, carrying excess fat tissue may increase breast cancer risk by increasing the body’s exposure to circulating estrogen. Previous research has shown overweight and obesity increase risk for breast cancer development in post-menopausal women, as does weight gain in adulthood. In fact, women who gained 60 pounds after the age of 18 had twice the risk of post-menopausal breast cancer versus women who maintained their same weight. To date, however, negative effects of overweight and obesity with regard to breast cancer were demonstrated only in older women, not pre-menopausal women with ovarian function.
Preventing excess weight gain in the first place is the best way to reduce risk for certain cancers and many other illnesses. It isn’t clear yet whether weight loss in adulthood reduces risk of cancer diagnosis or mortality. However, we do know that even a modest sustained weight loss (5%-10%) in people who are overweight or obese decreases risks for heart disease and diabetes. Given the potential relationships between these types of systemic and metabolic diseases and cancer growth, it is certainly possible that weight reduction could have even more benefits than those we already know.
Many risk factors for breast cancer, such as family history, are not modifiable. The good news is, avoiding excess weight gain – both for women at risk for breast cancer and those already diagnosed with breast cancer – is largely controllable. The following points are helpful in weight reduction and management over time:
Meet with a Registered Dietitian Nutritionist (RD/RDN) to discuss a nutrition plan that is personalized, practical, and sustainable over a lifetime. You can find a local RD/RDN who specializes in weight management and/or cancer nutrition at www.eatright.org.
Sharsheret is proud to have been awarded a grant from the Centers for Disease Control and Prevention to develop and implement our program for young Jewish breast cancer survivors, Thriving Again®. This grant was part of a larger CDC initiative to address breast cancer in young women. Since 2011, Sharsheret’s Founder and Executive Director, Rochelle Shoretz, has served on the Federal Advisory Committee on Breast Cancer in Young Women, along with representatives from other major breast cancer organizations, supporting the development of national resources and awareness of the Jewish population’s unique role in the conversation about breast cancer.
The CDC recently announced the launch of Know: BRCA, an initiative and web-based resource designed to promote BRCA gene mutation awareness in young women. 1 in 40 Ashkenazi Jews carries a BRCA gene mutation, compared to 1 in 345 in the general population, making Jewish families 10 times more likely to develop hereditary breast cancer, ovarian cancer, and related cancers. This CDC initiative brings Sharsheret another step closer to achieving our goals of enhancing awareness about the impact of BRCA gene mutations, the elevated risk of developing hereditary cancer among Jewish families, and the need for tailored support for the more than 250,000 women under 40 living with breast cancer in the United States today.
If you have a family history of cancer, or a BRCA gene mutation, call Sharsheret at 866.474.2774 or email firstname.lastname@example.org to speak with a member of our clinical staff and join our Genetics for Life® program.
This is my third year attending Sharsheret’s annual Benefit. The loving, accepting atmosphere envelops me as I walk in to the room. It feels so familiar even though I only know a handful of people.
I think back to May of 2011. I was undergoing chemo. The weather was getting nice outside, but I was stuck in an endless winter. I wished I could put on a pretty dress, go the Benefit, and celebrate with the Sharsheret women who were giving me strength, but I couldn’t drag myself out of bed. Chemo had zapped me of my energy. What a difference three years can make! My hair, while still not as long as it had been pre-chemo, falls respectably past my shoulders. My muscles still feel relaxed from my early morning yoga session. And I feel content knowing that I am here as a supporter of Sharsheret. I am having a “full circle” moment.
I walk in and see Rochelle Shoretz and the Sharsheret staff smiling and greeting their guests. The greetings are so warm it’s as if everyone is family. But that is what it feels like at Sharsheret. You are family. I make my way through the crowd of people kissing hello to those I know and smiling hello to those I don’t. I walk in to the main ballroom and take a moment to take in the beautiful décor. This year’s Benefit video highlights the Sharsheret B’nai Mitzvah program. It was perfectly fitting as this year Sharsheret celebrates its Bat Mitzvah year. What sticks with me the most is something that was said by a 13-year-old boy in the video who lost his mother and then his grandmother to breast cancer. He said, “It’s not hard to have an impact on other people.”
I think about my own daughter, 3 weeks shy of her Bat Mitzvah. I remember her tiny fingers, and can’t believe that she is the same person who stands beside me today. She is a beautiful young lady – mature, caring, and confident. Much like Sharsheret, she supports me as I support her. I look across the table at another link in my own Sharsheret (chain, in Hebrew), my mother. I am so glad that she is here with me this morning. As strong as I am – or think I am – it is comforting to have my mother next to me, especially while I watch the video presentation. I know from years past that I cry my way through them. This year is no different.
As I make my way around the room saying my goodbyes, I notice that the room is still full. No one is rushing to leave. This is a safe place where everyone feels supported and accepted. The wonderful women of Sharsheret should take pride in this beautiful organization and I am happy to be a part of it.
As all great 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.
‘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.
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.
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.
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.
© 2015 Sharsheret: Your Jewish Community Facing Breast Cancer