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  • Racing to Overcome Stigma in The Republic of Georgia

    “7 years ago, no one wanted to wear a pink T-shirt to identify herself as a breast cancer survivor. Because of the Race for the Cure, the number of women wearing pink T-shirts and talking about their experience with breast cancer is increasing every year. This is an amazing achievement – we are breaking the silence here in Georgia and eliminating stigma surrounding breast cancer!”

    This statement from a long-term volunteer in Tbilisi illustrates the powerful impact of our international Race for the Cure® series. Over the past 34 years, Susan G. Komen has helped change the way we talk about breast cancer in the United States. However, in countries like Georgia, stigma around breast cancer is still high and the disease is rarely discussed openly even though breast cancer is the most common cancer in women and leading cause of cancer death in the country. (Source: Globocan 2012)

    On Sunday, June 29, 2014, nearly 3,500 people participated in this year’s Susan G. Komen Georgia Race for the Cure at Turtle Lake in Tbilisi. This was the 6th edition of the Georgia Race, an event organized by our local nonprofit partner organization Women Wellness Care Alliance (HERA). HERA is working hard year-round to educate the Georgian public about breast cancer and the importance of screening and early detection.

    By joining forces with HERA and organizing this annual event, we are not only raising awareness and funds for breast cancer, but we are also creating a sense of community and hope for the 150 survivors in attendance – providing them with a day of celebration, as well as giving them the opportunity to share their experiences with other survivors, Race participants and media in attendance.

    “This is a great event to collectively raise our voices to improve general knowledge around breast cancer and dismissing misconceptions about the disease.” – Georgia Race Participant

    We are grateful that USAID continues to be a key supporter of the Georgia Race. VIP attendees in this year’s Race included the former First Lady of Georgia Sandra Roelofs, Krista Prozo of the US Embassy, the General Director of the National Center for Disease Control Amiran Gamkrelidze and Nancy Harris, the Vice President of JSI. Funds raised from the Race will be reinvested in local community outreach programs that will help underserved women get access to screening, diagnostic and treatment services.

    Learn more about Komen’s global programs.

  • Understanding Metastatic Breast Cancer & Research

    Guest post by Cheryl JerniganCPA, FACHE, Komen Scientific Advisory Board Member and Advocate in Science Steering Committee Member 

    Komen Kansas City’s June 18th webinar offered both sobering and hopeful information, which was all too real for many of us.  Monday morning, we lost a dear friend, Lisa Covington, to metastatic breast cancer. Her inspiring, often painful 13-year battle with metastatic cancer fuels our determination to stop breast cancer, especially the “Big M!”

    But as we learned from Komen Scholar Dr. Danny Welch, that’s far from easy.

    I’ll start the story where Dr. Welch ended it…with a call to action!

    Living with the “Big M” can feel lonely at times. People with metastases live like they are waiting for the other shoe to drop. Often, family, physicians, and employers treat them differently. Few people want to talk about the “Big M;” even fewer really understand it.

    For the Lisa’s of the world, we need to tear down any stigma and bring metastatic cancer out of the dark ages, much like Betty Ford and Nancy Brinker have done for breast cancer!

    Metastatic cancer causes over 90% of cancer deaths. Yet it is estimated that less than 5% of cancer funding focuses on metastasis.

    The complex, evolving nature of metastatic cancer cells, drives part of this lack of funding.  Metastatic cells acquire and continually evolve characteristics they didn’t have before, allowing them to multiply, travel and set up camp in other parts of our body.

    They are adaptive in breaking through, and sometimes even co-opting, our body’s many defensive systems in their quest to grow and travel.  Some will move in clusters, like a pack of teenagers, while some prefer to act alone. Others act like Houdini – able to squeeze through small spaces.  Then there are the Star Trek-like cells that pass through other cells, beaming themselves from one location to another.

    What’s even more frightening is a tumor smaller than a pencil’s eraser will shed 1-4 million cells into our body every day, leading some to believe that once the horse is out of the barn, it’s virtually impossible to control it.

    Fortunately, Dr. Welch and other dedicated researchers don’t believe that!

    Scientists estimate that less than 0.01% of cancer cells become metastatic.  So millions of cancer cells invade and get into our blood stream.  BUT few survive!

    The hallmarks of metastatic cells are their ability to:

    -Invade the body (i.e., break away from the original tumor site(s), like the breast),

    -Survive (i.e., avoid being killed by our body’s own natural defense systems and manmade treatments, and find resources to fuel its growth),

    -Establish “camp” in other parts of the body, AND

    -Colonize (i.e., grow a family of like-minded tumor cells that take over the “campsite(s)”, often in our bones, liver, brain, etc.).

    The “good news” is that metastatic cancer cells have to be able to do ALL four, and that’s not easy.

    Some genes have been found that promote, or won’t suppress, metastatic breast cancer.  Research is also looking for genes that will stop or halt cancer. For a cell to metastasize, all the critical genes must be present and their “expression” (i.e., functioning with each other) coordinated.  If we can knockout one of these key genes, it could halt metastasis’ deadly threat.

    Dr. Welch’s research, funded in part by Komen, is exploring two excitingly hopeful avenues to halt metastasis and discover information to more precisely identify whose tumors and genetic factors put them at high risk for metastasis.  His research is focusing on:

    -A gene (KISS1) that research indicates can block a tumor cell’s ability to “colonize.”

    -Mitochondria (the structures within our cells that convert energy from food into a form cells can use to function and grow) and their role in enabling a cell’s metastasis.  This could potentially identify who is predisposed to developing metastatic cancer.

    As Dr. Welch continues his important contributions to solving one of the most difficult puzzles in breast cancer, there are ways we can all take steps toward a future without breast cancer:

    -Increase awareness and understanding about metastatic breast cancer.

    -Invest in research to end metastatic cancer’s death toll. Komen has invested more than $91 million since 2006

    Onsite at the webinar: Lori Maris, Managing Director, Komen Affiliate Network; Cheryl Jernigan, advocate member, Komen Scientific Advisory Board & Komen KC Board member; Danny Welch, Ph.D., Komen Scholar & The University of Kansas (KU) Cancer Center Chair, Dept. of Cancer Biology; Nikki Cheng, Ph.D., Komen-funded researcher & Assistant Professor, KU Division of Cancer and Developmental Biology; & Carli Good, Executive Director of Komen Kansas City.

    -Collaborate with other organizations to ask the hard questions. Komen is proud to be a founding member of the Metastatic Breast Cancer Alliance – a group of 19 non-profit organizations and five pharmaceutical industry partners with the vision of transforming and improving the lives of women and men living with metastatic breast cancer.

    Across the country, local programs funded by events like your local Race for the Cure, are helping women and men living with metastatic breast cancer – offering financial assistance, access to resources and, sometimes most importantly, support.

    As a member of Komen’s Scientific Advisory Board, the Komen Advocates in Science Steering Committee, a long-time, passionate breast cancer advocate and a survivor, I am excited to be a part of an organization committed to ending ALL breast cancer. Komen will not shy away from this complicated question.  For the sake of those living with metastatic disease and everyone who has ever been touched by breast cancer, please join us in our mission to end this disease once and for all!

    If you’d like to listen to the webinar or view the slides, click here.

  • Fabulous Four Strike Against Breast Cancer

    Four women from four different states, with one major thing in common – they are all breast cancer survivors. Oh, and one more thing – they all love to bowl! Kathy, Barb, Kristal and Shannon are the inspirational winners of the 2014 Fabulous Four Contest, an essay contest launched by Bowl for the Cure®. Now in its 14th year, Bowl for the Cure® was created through a partnership between Susan G. Komen and the United States Bowling Congress (USBC), and has raised more than $10 million to date to support the fight against breast cancer.

    Four inspiring women were chosen from a nationwide pool of applicants to experience the once-in-a-lifetime trip. It was a week that the four ladies will never forget. Not as bowlers, and definitely not as breast cancer survivors. They started their five-day trip in Dallas, where they toured Komen’s Global Headquarters – and we at Komen got to celebrate them.

    From there, the ladies were whisked to the International Bowling Campus (IBC) in Arlington, TX, where they toured the International Bowling Museum and Hall of Fame, and received a really special opportunity – a bowling lesson from Team USA coaches. Then it was off to Reno, Nevada, where they were part of the opening ceremonies at the Women’s Championships, and bowled at the team event as the Fabulous Four.  Watch highlights from their five-day adventure.

    Meet the winners

    We at Komen were so inspired by these four women:

    Shannon Thompson & her daughters

    Shannon Thompson – Spring Creek, NV – Shannon was diagnosed at the age of 34, with three small children. She didn’t let it keep her down – “rocking the bald head,” she fundraised not for herself, but for Komen, because she wanted to help prevent anyone else having to go through what she did.

    Kristal Kelly – Smithfield, NC – Kristal’s mom died of breast cancer at the age of 45; eleven years to the day she lost her mother, Kristal received her own breast cancer diagnosis. Since then, she has lost other family members to breast cancer, and volunteers with organizations fighting to eradicate the disease.

    Kathy Adams – Bountiful, UT – During training for the Salt Lake Marathon, Kathy was diagnosed with breast cancer. Going through surgery and reconstruction, the weeks of inactivity were difficult. Today, Kathy is running marathons, riding her bike, and is in two bowling leagues.

    Barb Demorest – Bellingham, WA – Breast cancer gave her a new purpose in life. After an unsuccessful attempt at breast reconstruction, she was inspired to create knitted “knockers” – she networked yarn shops, volunteer knitters and cancer clinics together, and now brings a smile to women’s faces when they are feeling hopeless and vulnerable.

    Want to meet the Fab Four up close and personal? Watch the featured story in the July edition of Komen TV Take 5!

  • The Metastatic Breast Cancer Conversation

    The following blog appeared in The Huffington Post on July 7, 2014.

    There are many interesting people in the breast cancer movement, and Shirley Mertz ranks among one of the most interesting. A former high school principal, Shirley leads the Metastatic Breast Cancer Network and serves as a Susan G. Komen Advocate in Science, bringing the patient’s perspective to Komen’s research granting decisions. Shirley has also had metastatic breast cancer for the last 11 years, living like so many with a schedule of regular checkups where she learns whether the latest treatment is working and, if not, which treatment to try next.

    It’s a cycle she calls “Scan, treat, repeat…” and like so many, she thinks breast cancer organizations can do better. So Shirley advocates on behalf of those living with metastatic breast cancer to support patients and work for better outcomes in the clinic.

    I was pleased to share the dais with Shirley last week at a media briefing about metastatic breast cancer, hosted by Pfizer. We were joined by Dr. Marc Hurlbert, executive director of the Avon Foundation for Women Breast Cancer Crusade, by Sally Susman and Dr. Cynthia Huang of Pfizer, and by Amy Robach, the ABC News morning anchor whose recent breast cancer diagnosis has made national headlines.

    The conversation was frank. Metastatic breast cancer — that is, cancer that’s spread from the breast to other organs — causes the majority of the 40,000 breast cancer deaths annually in the United States. The five-year relative survival rate for metastatic disease is only 24 percent, although there are women, like Shirley, who may live with the disease for many years.

    Metastatic breast cancer claimed the life of our namesake — Susan G. Komen — who was diagnosed with breast cancer in 1977 and died three years later. In Suzy’s time, people crossed the street to avoid her, unsure of what to say and perhaps even afraid they would “catch” her cancer. Breast cancer wasn’t discussed in polite company, even in the 1980s. There were few breast cancer centers, little in the way of treatment options and a stigma and shame around breast cancer itself that kept many women feeling isolated and alone with their disease.

    Unfortunately, many living with metastatic disease feel that same isolation today. They deal with friends who don’t quite know what to say, anxious family members and even with those who suggest that maybe these patients aren’t “fighting hard enough” or didn’t do something to prevent their disease. There are often significant psychological, physical and financial pressures along with the fear that the latest treatment will stop working.

    “Since there is no cure, we are always in treatment,” Shirley told us.

    We can and must do better for the tens of thousands of women and men living with metastatic breast cancer in the U.S., and for those who will be diagnosed with it. Fortunately, breast cancer organizations have heard this call and are stepping up.

    Last fall, 16 breast cancer organizations, including Komen, came together to form the Metastatic Breast Cancer Alliance (MBCA). Four new organizations have joined the fold since then, working in partnership to address the most pressing issues in metastatic disease. Dr. Hurlbert serves as MBCA chairman.

    Komen has funded $91 million in scientific research into metastatic disease in just the past eight years alone. Very importantly, we’re also working to cut through the isolation and stigma of metastatic disease by funding outreach programs in hundreds of communities across the country. These programs provide insurance co-pays, medical supplies, rent, groceries, transportation to treatment and other services, offering real-time help for people dealing with the profound physical, financial and emotional challenges of this disease.

    As I participated in this event last week, it affirmed my belief that organizations like Komen, Avon and others can and must work together on issues such as metastatic disease in an even more collaborative and focused way. The formation of the Metastatic Breast Cancer Alliance is one step but, again, we can all do more.

    Cancer organizations large and small can jointly fund high-reward research. We can develop and fund more widespread metastatic programs. And we can jointly develop programs to address disparities in treatment that lead to worse outcomes for many women of color and medically underserved individuals.

    My pledge as president and CEO of Komen is to seek greater collaboration among cancer organizations, research organizations and industry in order to ensure we do everything in our power to end the most lethal forms of breast cancer.

    We can do this, and we must do this. Because lives literally hang in the balance.

  • Advancing Survivorship through Multilevel Collaborations

    Post by Jacqueline McKnight, Susan G. Komen Scientific Programs Specialist

    Since 1982, Komen has played a critical role in many advances in the fight against breast cancer – transforming how the world talks about and treats this disease and helping to turn millions of breast cancer patients into breast cancer survivors.

    With that in mind, last week I had the privilege of attending the 7th Biennial Cancer Survivorship Research Conference in Atlanta, GA, which garnered over 500 attendees from at least 32 countries around the world.

    When you enter the “cancer world,” particularly by way of employment, you begin to see the same people over and over at conferences and meetings, so as I looked around, I started taking a mental inventory, “There is Komen Scientific Advisory Board member Dr. Amelie Ramirez . There is Kathy LaTour, editor at large for Cure Magazine. There are Komen Scholars, Drs. Ann Partridge and Patricia Ganz.”

    As I studied the attendees at the various sessions, I realized that the attendance was nearly 90 percent women.  Many had been tasked with implementing survivorship programs at their hospitals. The idea of a survivorship program is so new that the variety and depth of these programs vary greatly. One young woman from Oregon was a physician’s assistant, and had only recently begun survivorship appointments with oncology patients once or twice once they’ve finished their treatment.  I believe that the conference opened her eyes to the complex and ongoing needs of these survivors, most of whom will need more than one or two follow up appointments if they are to receive comprehensive survivorship care.

    Another young woman has developed, over the past two years, a program that follows survivors beginning in the middle of their cancer care so that survivorship services and staff are not new to them as they matriculate out of treatment. She helps patients with navigating insurance claims, she discusses and advises on everything from financial burden to sexual side effects and follow up care.  I was impressed with the comprehensive nature of the program, and I knew this young woman would be successful with her survivorship program when she told me that survivorship care plans are great, but that people in the field are so focused on the plan that they often overlook the needs of the patient.

    One of the major tenants of the meeting was that just as medicine is becoming more and more personalized, so must survivorship care.  This young woman had already recognized and acknowledged the unique needs of every patient.

    This patient-centered focus is exactly what leaders like Ramirez, Stovall and Ganz encourage and foster in others.  The outstanding research presented by an impressive array of panelists on how to engage patients in self-advocacy, how to reduce barriers for the underserved, the value of cohort studies and other sessions were all interesting and valuable.  However, for the attendees, most of whom care for patients, the most valuable part of the conference had to be the opportunity to interact with all of the seasoned, passionate, powerful female leaders in the cancer care world. These young women represent the next generation of caregivers and they are the people holding the hands, hearts and hopes of the 14.5 million (and growing) cancer survivors in the United States today.  It is important that they receive the best mentorship possible and they certainly did at this meeting.

    Learn more about quality of life and steps individuals can take to increase chances of surviving breast cancer on our Survivorship Topics webpage.