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  • A Victory for Women’s Health

    The American College of Obstetricians and Gynecologists today recommended annual mammograms for women 40-49, modifying earlier recommendations in what Susan G. Komen for the Cure is hailing as a “victory for women’s health.”  The new recommendations pattern Komen for the Cure’s longstanding position that women of average risk should be getting annual mammograms beginning in their 40s.  Komen Founder and CEO Ambassador Nancy G. Brinker says the new recommendations “should add clarity and weight” to the confusion over when to commence annual mammography.  The College represents 50,000 obstetricians and gynecologists who are often the front line for preventive screenings in women.

    Confusion about the issue escalated in November 2009 when the U.S. Preventive Services Task Force (USPSTF) recommended against annual mammography for women of average risk in their 40s. The USPSTF cited potential over-treatment, false positives and resulting anxiety, with no appreciable impact on mortality from the disease.  Komen continued to recommend that mammograms begin at 40, with Brinker noting that there is no question that “early detection saves lives.”

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    See Nancy Brinker discuss this topic on the CBS Early Show in the video below:

  • On the former First Lady Betty Ford

     

    Nancy G. Brinker, Eric Brinker and Betty FordOn Tuesday, I traveled to St. Margaret’s Episcopal Church in Palm Desert to attend the memorial services for former First Lady Betty Ford.  It was a truly beautiful and moving service that honored the spirit of my dear friend with an extraordinary sense of peace and grace.  I wish you all could have been there with me, and in so many ways I felt you there in spirit.

    Sitting in front of me were Nancy Reagan, Hillary Clinton, Michelle Obama and Roselyn Carter—each one there in friendship and respect for the remarkable woman they had learned so much from and loved so dearly over the years.  I thought about how Mrs. Ford shook convention by announcing to the world that she had breast cancer and how she invited us all to witness her experience in such a personal way. Someone pointed out at the service that she “introduced an entire generation to the whispers of breast cancer.”  And she did, it’s true. She was a great inspiration for my sister Susan who fought valiantly but ultimately lost her battle with breast cancer. She was an inspiration and a catalyst for me too, especially in those early years after Suzy died—she gave so freely of her time and her wisdom. Standing beside us at fundraisers and early events, Betty Ford infused our actions with confidence and made our fledgling group feel that we could change things, we could make a difference, we could end breast cancer forever.

    I considered Betty Ford a dear friend and knew I could always count on her guidance. When I discovered the lump in my own breast that was diagnosed as breast cancer, she was the first to call. She helped me stay clear and think beyond the terror, offering words of encouragement that have stayed with me for almost 30 years.  I am grateful for the voice she helped me strengthen in myself and raise in concert with so many others.

    Because Betty Ford was brave enough to be herself and speak her own mind, millions have found their voices too. Together we’ve brought the call-to-action to end breast cancer from a fearful whisper to an undeniable roar.  And as a result, breast cancer death rates are falling; treatments are improved, millions are screened, and women everywhere know that they are never alone with this disease. This is the door that Betty Ford opened for us. With gratitude for the bold and courageous life that she lived, we must keep that door open and never let complacency allow us to give up the fight.

    It was truly a privilege to sit in that beautiful sanctuary where the woman who made such a difference in my sister’s life, and in my own, was being honored—and to offer thanks for the extraordinary work that she did here on Earth. Let us learn from her life well-lived, a woman not afraid to be herself; who took on our issues, told us not to be afraid, helped us find our voices and showed us we could change. May she rest in exquisite peace.

  • Our visit to the FORCE Conference

    We were very honored to receive an award from FORCE, which stands for “Facing Our Risk of Cancer Empowered,” whose mission is to help women face the risk of hereditary breast or ovarian cancer proactively.  Our Director of Education, Susan Brown, accepted on behalf of Susan G. Komen for the Cure® and had some heartbreaking and joyous insights to share from the experience.

    The conference activities really showed FORCE’s mission in action!  There were information sessions from clinical experts, including past and present grantees of Susan G. Komen for the Cure.  There were presentations about basic genetics, decision-making, complementary and integrative medicine, exercise, diet, hormones, writing your story, BRCA gene mutations in men, chemoprevention, menopause, and more and more, and LOTS of photographs and presentations about reconstructive surgery.  One of the greatest challenges of the conference for me was deciding which session to attend!

    But at least as important to attendees as the scientific and medical sessions and information was the networking – the sharing of personal stories and information.  At every table and in every corner you could see heads nodding as personal stories were shared with others who had faced or were facing the same frightening and bewildering situations and incredibly difficult and life-changing decisions.

    And, then there was the “show and tell” – a closed door session with more than a hundred women showing each other the results of their reconstruction surgeries.  As Sue Friedman, founder and executive director of FORCE told me, “We used to do this in the bathroom.  So, now we have a bigger room…”

    Talk about efficient or one-stop shopping, this was THE place to be to learn a lot about the facts about heredity cancers for those at increased risk and the place to meet so many others there to do the same thing. And even though there were tearful moments, it was not a depressing or sad place.  It was a place of empowerment and support!

    I met mothers and daughters, sisters, husbands and wives.  One young woman was so happy to be there, to be in a place where she could TALK about her gene mutation and what it meant to her.  Her family won’t talk to her about the genetic mutation in their family; they think she is crazy for having her breasts removed; she didn’t think she had even had a card or phone call from them when she had the surgery.  I met her on Thursday night at the welcoming reception and she couldn’t wait to share her story and hear from others.

    I met a nurse practitioner who works in women’s health who is finishing up work on her doctorate to understand how women feel after they have make their decisions based on their genetic predisposition for cancer.  I met an English professor, Amy Boesky, who has published a book, “What We Have,” her memoir about how she grew up with the threat of cancer hanging over her head.  I met a genetic counselor who talked about her work and who was attending the conference for the first time – and on a Komen for the Cure scholarship.

    I met physicians and other FORCE advocates who are frustrated and anxious about the future of the research and availability of PARP inhibitors in the U.S. and worldwide and another who was celebrating the recent legislation in Michigan requiring specific elements in their informed consent prior to genetic testing. I talked to women from Australia, Israel, the Netherlands, Germany and Latin America – all either at increased risk of hereditary cancers themselves or working with women who are at risk.

    80% of the more than 500 attendees were attending for the first time.

    There were exhibitors at the conference – providing information on topics from reconstructive techniques to clinical trials, selling products ranging from healthy cooking cookbooks to jewelry, to denim flip flops with the FORCE logo to tees and more.  Our own Komen Central Florida Affiliate was there with our interactive educational game complete with big green spinning wheel – and the line was long at every break to participate to try to get the answer right and win a prize.

    One reason I was there was to receive The Spirit of Empowerment Award for Advocacy that was being presented to Komen.  These awards given by FORCE recognize the contributions of individuals and organizations that help empower, support and educate the hereditary breast and ovarian cancer community.  I was honored to represent Susan G. Komen for the Cureand our work in advocacy, specifically as we collaborated with FORCE on important issues, including the passage of the EARLY Act, our response to USPSTF guideline changes and promoting PARP inhibitor research.

    And, as often happens at meetings and conferences, I met people who are involved with Komen in many ways – in local Affiliates, as participants in Race or other events, involved with public policy locally, Grantees,  volunteers , industry friends and corporate sponsors.  It is rewarding and energizing meeting so many people who have been touched by Komen in so many ways.

    And, as I was heading to the airport, there were predictions of big thunderstorms and there were huge, tall, big black clouds in the sky.  I managed to get on as a standby passenger. On my way home a little earlier than expected, I was able to think about what I had learned and the people I had met, and to see how Komen’s support of this conference had helped FORCE act on their founding principle that no one should face hereditary cancer alone.

  • Celebrating the 22nd annual Global Race with Vice President & Dr. Biden

    In what is fast becoming an annual tradition, Vice President Joe Biden and Dr. Jill Biden for the third year in a row served as the Honorary Chairs for the Susan G. Komen Global Race for the Cure® in Washington, D.C.  And while they were unable to join us in person for the June 4 event, they once again graciously opened their home to more than 200 breast cancer survivors, supporters and community leaders for our annual Global Race Celebration at the Naval Observatory on June 10.

    Our founder and CEO, Ambassador Nancy G. Brinker, reminded everyone that in a town often divided by the political colors red and blue, we all boldly wear pink as a show of our united fight against breast cancer. And with events like last week’s Global Race, we are making a big impact in communities all across the world.  Thanks to the generous support of our partners, supporters and the tens of thousands of Global Race participants from across the National Capital Area – and the world – who walked, ran and fundraised over the past year, we raised $5 million that will enable us to continue our work investing in local community breast health education, screening and treatment programs.  It will also help us build on our work globally to share our knowledge and experience and to fund education and breast health services in regions where few exist.

    Dr. Biden, a long-time advocate in the fight against breast cancer, was introduced at the celebration by TODAY Show co-host and breast cancer survivor Hoda Kotb. In her remarks, Dr. Biden noted that “some of us are in the midst of battling breast cancer, some have beaten it, and some have lost a loved one to this terrible disease, but all of us must be a part of the race to find a cure.”

    Doing her own part to empower women in this fight, Dr. Biden founded The Biden Breast Health Initiative in Delaware nearly 20 years ago, which has now trained more than 10,000 high school girls about the importance of early detection, breast cancer prevention and good health.

    “Many of you know that I became actively involved in the fight against breast cancer about 20 years ago after several of my friends were diagnosed with the disease.  One of those friends lost her battle and I saw then just what a terrible adversary breast cancer could be,” said Dr. Biden. “My answer was to approach the problem as an educator.”

    Watch highlights from this year’s Susan G. Komen Global Race for the Cure®.
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  • 2011 ASCO: Parting Thoughts

    As a long-time breast cancer advocate, I’ve attended many scientific conferences, including several annual meetings of the American Society of Oncology (ASCO). The big breast cancer news coming out of ASCO this year was not about treating breast cancer but preventing it. But more about that later.

    Oncology research meetings are known for their slides with lots of charts and graphs that have interesting names like forest plot, waterfall graph, Manhattan plot, Kaplan-Meier curve, and — new for me this year — volcano plot. The dots and curves represent people, yet you rarely see a picture of a real person with cancer. The researchers do, however, thank and recognize the contribution of their patients, the men and women who participate in clinical research studies.

    Take, for example, the breast cancer prevention study. More than 4,500 women who did not have breast cancer but were identified as being at higher risk for the disease, agreed to participate in this news-making study. The results, presented on Sunday, showed the women who took exemestane (an anti-estrogen drug) for five years were much less likely to develop breast cancer than the women who did not receive the active drug.

    In another important study, 500-plus women with metastatic triple negative breast cancer agreed to be randomized (assigned by chance) to receive chemotherapy or chemotherapy plus a new, targeted therapy called iniparib. In this case, the results were considered to be negative because the new drug did not appear to provide additional benefit. But negative results are not all negative because they advance research and our understanding of breast cancer.

    Just two years ago, at this very meeting, iniparib made news based on the results of a Phase II trial. The earlier and much smaller trial showed very encouraging results for the women who received iniparib. Though the results from the more recent study are disappointing, they do illustrate the importance of large Phase III trials. It’s also important to note that this Phase III trial was completed very quickly in large part because so many women were willing to participate in the study.

    It’s too soon to say whether exemestane will be adopted as a prevention drug or if iniparib will have a place in the treatment of breast cancer, but we all owe our gratitude to the women who participated in these two studies. It’s because of them and the many women before them who have enrolled in other breast cancer research studies that we have made progress against this disease.

    There are still many unanswered questions about breast cancer, and Susan G. Komen for the Cure is directing significant dollars for research into the most challenging issues: treating triple negative breast cancer and metastatic disease and strategies for preventing breast cancer, to name a few. Some of this research has already led to new clinical trials that are currently enrolling participants, and I have no doubt we be hearing about the contributions of these women at future meetings.

    To learn more about breast cancer risk and other topics, visit Understanding Breast Cancer at www.komen.org. To search for breast cancer research studies, visit www.breastcancertrials.org.