August 3, 2011 Breast Cancer, Education, Global, Komen News, Komen Programs, Mission, Partners & Sponsors, Research
Guest post by Catherine Oliveros, Regional Director of International, Susan G. Komen for the Cure
I write from Panama, where Susan G. Komen President Elizabeth Thompson and I have traveled to meet with our in-country Komen team and with our partners, new and old, who are making a real difference in the lives of women in this country. Later this week we will have some exciting news about how we are going to be able to help three new NGO partners.
Today, though, we got to see firsthand what one of them – Casita de Mausi – is doing to help local women. Casita is a home for cancer patients receiving treatment at the Instituto Oncologico Nacional (ION), their National Cancer Institute. The patients range in age, some as young as 18, and type of cancer diagnosis – breast cancer being common for women, while stomach and prostate are for men. They are often low income and uninsured. Yet all patients and one family companion can expect to receive at least a 3 day stay with a clean comfortable bed, 3 meals a day, social support and lots of love from the staff of the home. These patients travel hours and sometimes days to get care at the ION since they can’t receive treatment anywhere else. The support from Casita enables them to complete their treatment.
While there we did not see patients, as the home in the morning is usually empty for cleaning because patients are usually at the hospital early and new patients usually arrive in the late afternoon, we still had an amazing experience. Walking into the home we immediately got a sense of the peace it provides its residents. We met with the incredible Casita staff and immediately recognized how this happy and warm group could clearly make residents feel comfortable and at “home” during a difficult period of their life. The staff work hard to give hope and provide safety to the people who walk in and out on a daily basis.
Casita continues to dream. On their current wish list is a new stove, because the current one is in danger of burning the place down it is so old and damaged. They also need a car or minivan to help them transport patients, as well as facilitate the process of picking up donations. And of course, they would like to be able to help more people.
Guest blog post from Jill Henry, Chief Operating Officer of the Susan G. Komen for the Cure Tissue Bank at Indiana University Simon Cancer Center, the only known healthy breast tissue and blood repository in the world.
Now that professional football is back on for the fall, we’re excited about a partnership between the NFL’s Indiana Super Bowl Host Committee and the Susan G. Komen for the Cure Tissue Bank at Indiana University’s Simon Cancer Center. Called “Indy’s Super Cure,” the idea is to merge the fight against breast cancer with one of the largest and widely watched events in the country (the Super Bowl, of course, next Feb. 5 in Indianapolis).
We announced the alliance in mid-July. It’s focused on three things: to increase the diversity of Komen Tissue Bank donors, concentrating primarily on women of color; to raise funds for research using Komen Tissue Bank samples; and to shine a light on the unique work that the Bank does to advance breast cancer research.
The Komen Tissue Bank is the only known repository for normal breast tissue and blood in the world. We collected our first tissue samples in 2005 from women who had not been diagnosed with breast cancer. Over time, we’ve collected samples from over 1550 tissue donors and over 6000 blood donors that will help researchers around the world compare normal breast tissue with cancerous breast tissue. With technology soon available to send digital samples to researchers around the world, these comparisons could help unlock the answers to how breast cancer develops and spreads. We hold regular collections (the next is Sept. 24 at the IU Simon Cancer Center) and we have many events planned for the months leading up to the Super Bowl to increase tissue donations and shine the spotlight on our work.
The devotion and passion of women to this cause has been nothing short of overwhelming. At our press conference, it was both heartwarming and heart-wrenching to see and listen to Traci Runge, who spoke to all of us about hearing of the Tissue Bank several years ago and rushing to donate her breast tissue, wanting to do something to help eliminate breast cancer from our lives. A good friend of hers – a young woman like Traci, with children the same ages as hers – was already fighting the battle, prompting Traci to donate her healthy breast tissue to the Komen Tissue Bank.
Three years later, Traci was herself diagnosed with the disease, and made certain she returned to donate again before her treatment started, making her samples quite valuable as the first examples of pre- and post-cancerous breast tissue. Traci appeared at the press conference but there was another, wordless story as well: she had just completed her chemo two days before the press conference – she was visibly weak as she sat in front of the microphone, but so determined to tell her story and encourage others. Traci, along with Lisa Miller (another early tissue bank donor who has now also donated pre-and post-cancerous tissue,) has put a face on breast cancer research.
Word is spreading about our Super Cure partnership, and it’s already having big effects in our small offices here at the Tissue Bank. Our phone rings more often, and we have had an increase in website traffic. We are thrilled and encouraged by the outpouring of support which is bringing in more volunteers, more donors, and higher general awareness.
We are so excited about the promise of this wonderful new relationship which will help the Komen Tissue Bank take a monumental step toward understanding and defeating breast cancer. Susan G. Komen for the Cure was the first to see the potential for the KTB and took a risk with a research investment, which now looks ready to pay off a hundredfold. We are so happy to be partners with them in traveling this new direction in breast cancer research.
Please visit us at komentissuebank.iu.edu for more information, and check out our work in the video below!
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.”Read more
See Nancy Brinker discuss this topic on the CBS Early Show in the video below:
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.