Ask Your DNA

By: Lisa Friedman, Ph.D., Sharsheret Peer Supporter

I recently attended the annual conference for FORCE (Facing Our Risk of Cancer Empowered), the national organization for hereditary breast and ovarian cancer. I was so happy to see Sharsheret’s exhibit booth there, because I realize what an important issue genetic cancer is for the Jewish community - and how so few women and men know that they are at risk. Sharsheret was a great help to me when I first needed to understand what it meant for me, as a Jewish woman, to be BRCA positive. I found information I urgently needed from Sharsheret's resources and website.

This is the information I wish I had known earlier in my own life: 1 in 40 Ashkenazi Jews carries a BRCA mutation that leads to extraordinarily high rates of genetic cancer in women. Women who carry a mutation have up to an 87% lifetime risk of breast cancer, and a 27% - 44% risk of ovarian cancer, depending on which kind of mutation they carry. BRCA mutations can lead to increased risk of cancers affecting men as well, such as prostate or pancreatic cancers, male breast cancer, and melanoma.

If women know about their risk ahead of time, they can choose from a wide range of options to help them find their cancer early or even to prevent it altogether. While recent research estimates that one million people in the U.S. carry high-risk BRCA mutations, only 5% of them know. I was one of those 95% who didn’t know, and I learned the hard way about the difference between knowing and not knowing.

I remember seeing articles about the BRCA gene in women’s magazines, but I always skipped right over them. My grandmothers had each lived long, healthy lives well into their eighties, and I never knew to look to my grandfathers’ sides of the family. I also never knew that the ovarian and pancreatic cancer in my family could be BRCA-related. Breast cancer seemed so separate — I never thought about it as genetically interlinked with other cancers. My doctors didn’t seem to know either. I have the classic family history that indicates testing is important: I am Ashkenazi Jewish, my mom died of ovarian cancer, and her father died of pancreatic cancer. Yet, not a single doctor ever suggested I check my DNA.

I ran into information on genetics by chance, as part of a research project on the future of healthcare. I was looking over a website for my project, when I noticed that it offered genetic testing that could help Ashkenazi Jews check for their risk of ovarian cancer. After talking with their genetic counselor, I signed up for a test.

I was shocked to discover I tested positive for one of the three BRCA mutations so common for Ashkenazi Jews. Once I learned I was at high risk, I had more extensive screening for cancer that I never would have had otherwise. After a completely normal mammogram, my MRI showed I already had breast cancer. I never would have had this MRI if my genes hadn’t provided advance warning about my risk. Learning my DNA potentially saved my life.

The Triumphant Call of the Shofar

By: Shera Dubitsky, Clinical Supervisor

Beginning in the Hebrew month of Elul until Yom Kippur, we hear the piercing notes of the Shofar and listen intently to its sounds. The reverberations of the Shofar can be heard in times of battle. I liken the sound to a heart beat. Most of the time, our hearts beat with a steady rhythm. We go about our regular routines, taking care of our families, meeting deadlines at work, volunteering in the community, spending time with friends. Tekiah. There are times when we are challenged, perhaps with a knowledge that one is a carrier of the BRCA mutation, or that one has been diagnosed with cancer or a recurrence. The rhythm of our hearts change reflecting our anxiety, our fears. Shevarim. Deep within the battle, our heart beat quickens as our anxiety heightens, and our fears overwhelm us. Teruah.

We don’t hear these sounds once. We hear the cycle of the Shofar notes throughout the holiday season, alternating between the steady calm notes of Tekiah to the quickened sounds of Teruah. So too, with the rhythm and challenges of our lives. When faced with difficult news, remember that with each Shevarim and Teruah, we return to the calmness of the single sound of Tekiah.

The Shofar can be a wake up call to stop and take time for introspection. As we listen to the notes of the Shofar, we can become aware of the changes of our beating heart. It is a reminder to attend to our bodies, to our instincts, to our emotions. The sounding of the Shofar can help us refocus and make sure that we are taking care of our hearts, minds, and souls. When we pay attention to the inner and outer sounds, we hear the last blast of the Shofar, a signal of hope and triumph. Tekiah Gedolah.

Shana Tova,

Shera

Vote for Rochelle Shoretz as your Jewish Community Hero!

Rochelle Shoretz
Teaneck, New Jersey

How is your Hero working to make the world a better place?

A self starting figure at the helm of Sharsheret, a national breast cancer organization, Rochelle is a Jewish Hero to the thousands of young Jewish women and families facing breast cancer today and to the Jewish community. Through her own breast cancer diagnosis, at the young age of 28, Rochelle saw a critical unmet need for support and resources for young women and families, of all Jewish backgrounds, facing this disease. Rochelle's commitment to filling this void has developed into a virtual lifeline for thousands of Jewish women and families facing illness who are coming face to face with isolation, fear, and their own mortality. The foundation for Sharsheret, Hebrew for "chain" or "connections", is built upon Rochelle's tremendous drive to serve the entire Jewish people, her determination to eradicate the stigma surrounding breast cancer so common in the Jewish community, and her understanding that bringing people together with similar life experiences is vital to the healing process.

How has your Hero impacted your life and inspired you?

I heard Rochelle speak soon after she founded Sharsheret following her first breast cancer diagnosis. Compelled to join her on her mission, I joined Sharsheret as a volunteer. I was so inspired by Rochelle's boundless energy, incredible intelligence, and deep commitment to the Jewish community that I chose to further my own career as a staff member at Sharsheret. I continue to be inspired every day as I work closely with Rochelle, who selflessly dedicates her life to thousands of others facing breast cancer as she fights her own battle, living with Stage 4 breast cancer.

To vote for Rochelle click here.

Ovarian Health 101 National Teleconference

Register Today With Team Sharsheret NYC!

Register with Team Sharsheret today and join thousands of women and men gathering in New York City's Central Park to participate in the Susan G. Komen Race For The Cure, a monumental breast cancer fundraising and awareness event to be held on Sunday, September 12, 2010*, 8:30 a.m. To join Team Sharsheret now, please register online at http://www.komennyc.org/, click on "Race For The Cure" click on "Join a Race Team," and type Sharsheret.

To purchase Team Sharsheret T-shirts and Tank Tops, please click here or call (866) 474-2774.

To sponsor Team Sharsheret today and feature your company on our Race T-shirts, please e-mail events@sharsheret.org or call (866) 474-2774. Deadline for Team Sponsorship is this Friday, August 13th.

*Fast of Gedaliah - All participants, walkers, and volunteers welcome.

Early Detection is Still the Best Way to Fight Breast Cancer

By: Lisa Weinstock, M.D., Sharsheret Volunteer

This year’s Sharsheret Benefit was a great tribute to the women (and the fabulous male speaker) who have faced cancer in battle – and survived. The support Sharsheret gives to women going through the difficult emotional and physical challenges of cancer treatment is priceless. I heard more than one woman talk about how much it meant to come home from the hospital to find Sharsheret’s Pillow of Support waiting to provide comfort. But I was even more heartened to hear Sharsheret encourage women to be vigilant in keeping their screening appointments. Early detection is still the best weapon in the war on cancer. But not all mammograms are created equal – and early detection often requires more than an annual mammogram.

We are all ready to bolt when the mammogram technician takes a few views and sends us on our way. But we do so at our peril. It is critical that more than the standard four views are taken and that they are read by a specialist in breast imaging who knows what to look for.

If you have been told you have dense breast tissue, additional testing is a must. In 2009, Connecticut passed a law that radiologists must tell patients when they have dense breast tissue and recommend an ultrasound. Here’s the reason: small tumors are visible as white spots on mammograms and can be obscured by dense tissue that also shows up white. On an ultrasound, the tissue images are gray so any area of white stands out. I know several women who had cancers diagnosed from an ultrasound that were hidden on mammograms. Additional tests such as MRI or molecular breast imaging are even more sensitive and can show tumors other tests miss. My patients hear me say that finding breast cancer is like a puzzle and each screening method helps put the pieces together.

So, when your radiologist recommends more than the standard views of an annual mammogram, and additional screening beyond your mammogram, don’t ignore the advice. We are not trying to make your life more difficult. We are trying to save it.

DISCLAIMER

THE VIEWS EXPRESSED ON THE BLOG ARE THOSE OF THE INDIVIDUAL USERS AND NOT NECESSARILY THE VIEWS OF SHARSHERET. ALTHOUGH SHARSHERET WILL BE MODERATING ALL MESSAGES POSTED TO THE BLOG, WE DO NOT CONFIRM OR WARRANT THE USEFULNESS, ACCURACY, OR COMPLETENESS OF ANY MESSAGES AND ARE NOT RESPONSIBLE FOR ANY DAMAGE OR LOSS RELATED TO THE ACCURACY OR COMPLETENESS OF THE INFORMATION. SHARSHERET DOES NOT MAKE ANY EXPRESSED OR IMPLIED WARRANTIES WITH REGARD TO INFORMATION OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, OR WARRANTIES OF TITLE OR NON-INFRINGEMENT. IN NO EVENT SHALL THE PROVIDERS BE LIABLE TO YOU OR A THIRD PARTY FOR ANY ACTION, OR FAILURE TO ACT BASED ON RELIANCE ON THE CONTENT POSTED ON THE BLOG. ALL INFORMATION IS PROVIDED WITHOUT ANY WARRANTY OF ANY KIND.

Sharsheret Voted AEPi National Philanthropy!

By: Ellen Kleinhaus, Project Manager and Campus Liaison

I had the privilege of spending this past weekend with Sharsheret’s Founder and Executive Director Rochelle Shoretz at the Alpha Epsilon Pi International Convention in New Orleans.

“As a young woman, I likely fantasized about talking about breasts in a room of 450 men, but I never imagined it would be in this context,” were Rochelle’s opening words as she presented "Sharsheret On Your Campus" to an audience of more than 400 AEPi brothers. She began the presentation surrounded by laughter and finished with a roaring standing ovation. At that moment we knew that together, AEPi and Sharsheret would “Change the Face of Breast Cancer”.

Thank you to AEPi for choosing Sharsheret as one of your national philanthropies and to all the AEPi brothers from across the country who introduced themselves to us and made us feel so welcome. We truly value the knowledge you shared with us over the weekend - your insight into life on campus, the multitude of funny stories, detailed advice about our presentation, and innovative suggestions for campus events. We were most overwhelmed by YOUR gratitude to us for bringing Sharsheret into your lives. We were touched by how many of you thanked us for letting you know that you have a place to send your sisters, mothers, and grandmothers diagnosed with breast cancer for support.

Special thanks to Andy Borans, Adam Teitlebaum, Michael Waitz, Sam Zitin, and the AEPi Philanthropy Task Force for making this partnership possible. Your encouragement and support is so meaningful and we are grateful for our new partnership and our many new friends. We look forward to growing our Sharsheret on Campus program and working with all of our campus partners - AEPhi Sorority, AEPi Fraternity, Hillel: The Foundation for Jewish Campus Life, and Chabad on Campus International Foundation - in the years ahead.

Tracing my Family History Destroyed by the Holocaust

By: Rose Brystowski, Sharsheret Peer Supporter

Everyone has fantasies. I fantasize about long-lost relatives. We are reunited, living close, and sharing happy lives together. Unfortunately, fantasies are just that - dreams. It is hard enough living with only memories and tales. No grandparents, very few aunts and uncles, no cousins. But even worse than that is having no family history.

When my sister was diagnosed with breast cancer, one of the first questions her medical team asked was did she have a family history of breast cancer? What do we say when we have no family history at all? We have a few facts and a lot of maybe’s. Maybe if our ancestors hadn’t died during the Holocaust they would have had cancer. Maybe if they were not exterminated they would have lived long lives.

When I went for my genetic counseling appointment, the genetic counselor gave me a large chart to help trace my family history and identify known BRCA gene carriers and breast cancer survivors. My chart was basically empty. We don't have a past. Many people feel the anger all over again, how we suffer even now 60 years after the Holocaust ended. I try to move forward and I don't linger with the absence of history. I feel that I must do something now, for my children, for my husband. Although I don't have a history of breast cancer with my known family, my children do. They know I am BRCA positive, they know I have options and medical support, they know that when presented with an obstacle we must face it and overcome it. History doesn't change the now or the future.

When faced with a major life-changing event we often want to share the news, whether it’s good news or bad. My sister's diagnosis in October of 2008 was such an event. But not everyone wants to share this news. In addition, not everyone “gets it”. They don't know the shock and fear we go through when presented with such a challenge. I began talking to friends who either had a relative dealing with breast cancer or were survivors themselves. While watching our sons playing basketball, we talked about Sharsheret. When I received the news that I was BRCA positive I contacted Sharsheret and was linked to another woman who had faced the same news. She gave me insight and information, but most importantly, she calmed me and I am so grateful for that. Now that I am finishing my reconstruction, I want to help others and provide them with basic information, including what to expect after surgery, how it affects your relationships, and how to deal with it all with humor and a sense of balance. I tell people we are now part of a small and exclusive group and we must help each other.