On 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.
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.
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.”
June 10, 2011 Breast Cancer, Breast Cancer News, Education, Komen Leadership News, Mission, Research
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.
Guest post from Shelley Fuld Nasso, Susan G. Komen for the Cure Director of Public and Medical Affairs
Right now, 30,000 people in the field of oncology have converged in Chicago for the American Society of Clinical Oncology (ASCO) Annual Meeting. The theme for the meeting is Patients, Pathways, Progress. For advocates, it is an incredible opportunity to hear presentations of the latest cancer research and interact with researchers, including many who have been funded by Susan G. Komen for the Cure. It also means a LOT of walking between sessions, receptions, briefings, and meetings. Thank goodness for comfortable shoes.
I wanted to share some of my own highlights from the first two days of the meeting, starting with the sweeping and inspirational Presidential Address by Dr. George W. Sledge, Jr., ASCO President and member of Komen’s Scientific Advisory Board. Dr. Sledge talked about “stupid cancers,” which are easier to treat effectively, and “smart cancers,” which are much more difficult to treat, are more likely to be resistant to treatment, and have a higher chance of recurrence. Dr. Sledge also talked about the new genomic era of cancer research that will be required to target the biology of smart cancers, and he outlined systemic changes that will be needed to meet the challenges of the genomic era, including changes in the oncology workforce, clinical trials system, and regulatory framework.
In a tribute session to Dr. Sledge as he concludes his year as ASCO president, his colleagues toasted him and spoke of his dedication to his patients and to his mentees, whose careers in breast cancer research he has fostered and encouraged. A team of his patients and friends – aptly named Sisters Sledge – participate in the Komen Central Indiana Race for the Cure every year. Dr. Sledge is clearly a compassionate, caring physician, in addition to being a leader in breast cancer research and clinical practice.
I also had the honor of meeting Dr. Jane Cooke Wright, who was one of the seven oncologists who founded ASCO in 1964, and the only woman. She was a trailblazer in many ways as an African-American woman and a leading researcher, and she was a pioneer in developing chemotherapy treatments.
Here are some other highlights from the sessions and posters I visited.
Dr. Bryan Schneider of Indiana University Simon Cancer Center presented significant early results of his work funded by a Komen Promise Grant. Dr. Schneider and his team identified a genetic marker that predicts whether patients receiving the chemotherapy drug paclitaxel are more likely to experience neuropathy, or nerve damage. Neuropathy is a common side effect of chemotherapy and can limit patients’ ability to function and interrupt treatment. In the future, this discovery may help physicians counsel patients about the risks and benefits of the treatment.
Amy Bulman of the National Cancer Institute’s (NCI) Office of Advocacy Relations presented to patient advocates about the Advocates in Research Working Group’s recommendations on how NCI can meaningfully engage advocates in the research conducted and funded by the NCI.
Dr. Albert Neugut of Columbia University received the Conquer Cancer Foundation of ASCO Improving Cancer Care Grant, funded by Susan G. Komen for the Cure. Dr. Neugut will conduct a randomized trial of women with breast cancer who are receiving adjuvant hormone therapy to see if text messages via cell phone improve adherence to the prescribed therapies. This study will also analyze the cost-effectiveness of efforts to improve adherence.
Dr. Ann Partridge, of Dana-Farber Cancer Institute and a Komen Scholar, presented results of the ASCO Breast Cancer Registry Pilot, also funded by Susan G. Komen for the Cure. The pilot confirmed the feasibility of collecting data to support quality assessment in oncology practices. Additionally, the project used the data to create treatment summaries for patients, improving communication with patients about their care. A presentation later in the meeting by Dr. Victoria Blinder of Memorial Sloan-Kettering Cancer Center will explore patient satisfaction with the treatment summaries.
Mary Lou Smith and Elda Railey, co-founders of Research Advocacy Network, presented their survey of patients with metastatic breast cancer and analysis of patient perspectives when making treatment decisions. The survey presented participants with two hypothetical treatment options, each with a specified likelihood of both benefit and side effects, and asked participants to select a treatment or choose not to treat. Respondents under age 50 were more likely to choose treatments than older counterparts, and women with young children (under age 12) were much more likely to try any treatment option, even with a high likelihood of side effects. Analysis like this is important to understand the factors women weigh in selecting treatments or deciding to stop treatment.
Dr. Anne Marie Murphy, Executive Director of the Metropolitan Chicago Breast Cancer Task Force, analyzed breast cancer quality metrics at facilities in Chicago and found that the majority of institutions were not able to show that they met benchmark quality measures. The Chicago Breast Cancer Quality Consortium, a project of the task force, was founded with a $1 million grant from Komen to address disparities in outcomes for African American women in Chicago, who were dying at a rate 62 percent higher than white counterparts with breast cancer. A subsequent grant from Komen is allowing the consortium to provide support and quality improvement interventions to institutions in Chicago.
In preparing to come to this meeting, I pored through the list of abstracts for presentations by Komen-funded researchers. There is simply not enough time to attend all the presentations with ties to Komen. So this is just a sample of some of the presentations and posters I attended in the first two days of the meeting.
Obviously it is a very busy meeting. So busy, in fact, that there’s not much time to enjoy the beauty and culture of Chicago. But I did have one cultural treat when my cabdriver, who is also a blues musician who plays at the famed Kingston Mines, played the harmonica for me (while driving, no less!).