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A diagnosis of ovarian cancer earlier this year was a life changing event. Fear, anxiety, sadness, body image issues, and short and long term effects of chemotherapy, only begin to touch on the myriad of worries which confronted me. Still, one of the most difficult things to deal with has been the not-so-surprising presence of a genetic predisposition (due to a BRCA2 mutation) to cancer. The thought that each of my four young adult children had a 50% chance of inheriting this gene was almost more than I could bear.
How does one deal with the guilt? How does one speak with her children about such an inheritance? Does one inform female and male children at the same time and in the same fashion? Does one give married and still unmarried children the same details? Does one advise her children to be tested as soon as possible? Will a positive BRCA2 test with all its implications interfere with a developing or even presently stable relationship? Can one avoid adding pressure to the lives of adult children when discussing the issues of marrying early and having babies as quickly as possible so that they may take advantage of risk reduction therapy at a young enough age to reduce the chances of ovarian cancer and breast cancer?
There are no standard answers to any of these questions; indeed the approach will surely differ for each family based on the individuals and the family dynamics. Several interactions have guided my thinking regarding these issues.
Firstly, I cannot say enough positive things about resources available through Sharsheret. Sharsheret’s genetic counselor made herself available to me within a few minutes of my initial call and kept closely in touch. She pointed out several important concepts to me, including the ideas that: 1) I am not the only source of information for my children; 2) Each individual on the receiving end of the information must decide for him or herself how to proceed; 3) All of the information does not have to be discussed in one sitting– indeed the important thing is to keep the lines of communication open; 4) Difficult as this discussion must be, knowledge is empowering as it allows positive actions to be taken.
Secondly, a wise and spiritual friend focused my attention on the positive implications associated with this difficult discussion, namely: truth, trust, potential for decreasing uncertainty, and potential for risk reduction actions.
Finally, one of my children, aware of the pending issue, asked me straight out about the results of my testing, before I was ready to have the big discussion. When I made the result known to her and spoke with her about some of my concerns, I was amazed at the strength she imparted to me by her personal views.
I have yet to work through all the details, but I have gained understanding through learning as much as possible about the implications of the BRCA gene mutation, and through speaking with wise and trusted professionals and friends.
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.
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.
‘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.
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.
Last week, the US Supreme Court ruled on a significant gene patenting case. The issue before the Court was whether or not a company’s patents on the BRCA1 and BRCA2 genes could be upheld. The landmark ruling states that a gene is a naturally occurring product of nature, and therefore cannot be patented. The Supreme Court’s ruling has important implications for clinicians, cancer patients, and individuals who are at higher risk of a BRCA mutation than the average population either by personal or family history. Many say that the Court’s ruling will increase access to genetic testing by eliminating the monopoly on the test, which will thereby reduce the cost of testing significantly and allow for consumer choice. For many years, the American College of Medical Genetics has asserted that gene patents “stand firmly in the way of good patient care, interfere with informed decision-making by patients, impede training of the next generation of lab professionals and restrict the flow of information that is critical to advancing medical knowledge and better medical care accessible to all.” Therefore, some anticipate that this decision will better enable appropriate and more affordable testing, particularly for those who are uninsured or underinsured.
Carrie Horton, MS, CGC
Director of Genetic Counseling
Brad Somer, MD
This morning, the Supreme Court rendered its decision in the gene patenting case, holding that “genes and the information they encode are not patent eligible under §101 [of The Patent Act] simply because they have been isolated from the surrounding genetic material.” The Court noted that Myriad Genetics, the laboratory that currently offers testing for the BRCA1 and BRCA2 mutations found in 1 in 40 Ashkenazi Jews, did not create or alter either the genetic information encoded in the BRCA1 and BCRA2 genes or the genetic structure of the DNA. Though the Court noted that Myriad found an important and useful gene, it acknowledged that groundbreaking, innovative, or even brilliant discovery does not by itself satisfy the §101 inquiry and is therefore not subject to patent protection.
What does the Court’s decision mean for thousands of women and families at risk of breast or ovarian cancer or considering genetic counseling or testing?
Call us at Sharsheret or chat live with our staff genetic counselor. Thousands of women, men, and families reach out to us for support and information about cancer genetics. We’ll walk you through your options, and connect you to others who have done the same.
The holiday of Shavuot celebrates the giving of the Torah to the Jewish people at Mount Sinai. It is recorded that the people heard thunder and lightning, and clouds and smoke filled the air. The experience was overbearing to the senses. The children of Israel shook with fear. Ever have one of those days?
I imagine that those of you who have heard the words “You are BRCA positive,” or “You have cancer,” or “The cancer has come back,” experienced an overwhelming burden to your senses. Perhaps you, too, shook with fear. The ensuing thoughts that recur after hearing these words can be more agonizing than the realities. We are often overachievers when it comes to imagining worse case scenarios.
While we can’t stop intrusive thoughts from entering our lives, we can respond to the thoughts in a way that feels calming and empowering. When an intrusive thought comes my way, I imagine myself putting my arm around it, similar to the way that I would put my arm around someone’s shoulder, and I “say” to the thought: “I knew you were coming. I was expecting you. You can hang out, but I have things to do.” I find the more I welcome the thought, the less it overcomes me.
One woman in Sharsheret’s Embrace group for women living with advanced breast cancer shared, “I know that I feel more anxious when I’m waiting for test results or going to appointments. Those days I take the anxiety with me. All the days in between belong to me and the anxiety needs to find someone else to hang out with.” These wise words can calm the thunder and comfort the soul.
Oh dating! People say it's fun, but is it really? The butterflies, bad dates, labels, unreturned phone calls. I would call it hard, to say the least. When you've tested positive for the BRCA gene at 24, dating is even more challenging. I kept asking myself, who would want to date me with my increased risk for developing cancer? This is where I was about two years ago.
I met Dovid on a blind date and entered the experience with a ton of preconceived notions. I assumed no guy would want to date a BRCA positive girl. It took me almost 3 months to tell him about it. I built it up to be this undefeatable and overwhelming situation that he had every right to walk away from.
Boy was I was wrong! He took everything in stride. He told me about how he lost his mom to breast cancer, and how he thought I was making good decisions. He tackled every aspect with me, together, and made me laugh along the way. He was there with me and pushed me to strive for better doctors and better outcomes. He helped me remember all the other things that make up who I am; sarcasm, Harry Potter, brightly colored sneakers, and Scrabble, not just BRCA. Things that make me Amy.
Dovid showed me that he loved all of me, even the parts that I assumed he wouldn't. I learned an important lesson: Don't assume - it really gets your nowhere. Accept BRCA as a part of your life, but don't let it define you. There is so much more to life that's in store. At the age of 27, the night before the second surgery of my prophylactic mastectomy, Dovid proposed. I got my fairytale. I was fortunate to find Dovid, who supported me through my experience, and I’m excited to join Sharsheret’s national Peer Support Network so I can give back and support other Jewish women dealing with BRCA.
© 2014 Sharsheret: Your Jewish Community Facing Breast Cancer
Sharsheret is a 501(c)(3) charitable organization ID# 13-4198529
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