Guest blog by Joseline Lopez, Komen Helpline Specialist
When Vivienne contacted the Susan G. Komen® Breast Care Helpline, giving up felt like her only option.
In April of 2014, Vivienne Randle received the daunting news that she had triple negative breast cancer (TNBC). After her bilateral mastectomy, Vivienne’s fears of the chemotherapy side effects, and not knowing what to ask her doctor, halted her decision-making process. Feeling stuck and unable to decide whether she should continue with treatment, she called the helpline.
Acknowledging her fears and addressing her anxiety made her feel at ease. We talked about chemotherapy, its’ side effects and what to expect –using one of Komen’s resources “Questions to Ask Your Doctor About Chemotherapy”.
As I went on, Vivienne’s tone of voice began to change, and she was no longer crying. As we continued to talk, she shared that she was also struggling with finances and a lack of emotional support. These factors contributed to her feeling alone during her breast cancer journey.
Thankfully, I was able to connect her with many resources, including the Co-Pay Assistance Fund through the Patient Advocate Foundation which Komen funds. I also referred her to an organization called CancerCare for emotional support. Vivienne felt relieved, and expressed her gratitude for being able to express herself to someone who compassionately listened to her situation. Vivienne then expressed her desire to, “reach through the phone and hug me.”
Upon hearing this comment, I felt a wave of happiness and joy come over me. I felt so proud and happy to be working on the helpline and that I was able to serve and connect with Vivienne. Working on the helpline can be challenging but challenges lead to priceless rewards and help strengthen us in ways that we had never imagined.
A week later, I made a follow-up call to Vivienne and she told me that she was able to make a treatment decision and also received financial assistance! She agreed to call us back if anything else came up and she continued to express her gratitude.
Vivienne’s experience is unique, yet in many ways similar to the experiences that other breast cancer survivors face. Being able to have an impact in the lives of men and women facing this disease is both an honor and pleasure.
The helpline is here to serve the breast cancer community by providing breast cancer information, financial resources, emotional support and sometimes just a listening ear.
If you have any questions about breast cancer, we encourage you to contact our breast care helpline at 1-877 GO KOMEN (1-877-465-6636). All calls to our breast care helpline are answered by a trained and caring staff Monday through Friday from 9:00 a.m. to 10:00 p.m. ET and from 6:00 a.m. to 7:00 p.m. PT.
We are waiting for your call!
Susan G. Komen has partnered with One Voice Against Cancer (OVAC) for more than ten years to call on Congress and the White House to make funding for cancer research and prevention programs a top priority. OVAC member organizations host an annual Lobby Day where volunteer representatives come to Washington, D.C. for training and then spend a full day meeting with legislators to share the human face of cancer in America. This year’s Lobby Day took place earlier this month when Komen representatives joined more than 130 advocates from 25 organizations on Capitol Hill to deliver a unified message on the importance of increased investment in cancer-related programs.
As a nation, we are facing a crisis in cancer care. As the population ages, the number of new cancer cases in the United States is projected to increase by as much as 42 percent by 2025. Despite this staggering statistic, funding to the National Institutes of Health (NIH) has dropped 22 percent ($6 billion) since 2003. The situation is even more dire when looking at cancer research conducted by the National Cancer Institute (NCI) where funding has been cut by nearly 25 percent. The trend of eroding cancer research funding must end if we expect to make the scientific advances that are needed to address the challenges we currently face; bringing attention to this critical issue, OVAC has called on Congress to increase funding for the NIH to $32 billion including $5.26 billion for the NCI.
NCI-funded research has played a role in every major cancer prevention, detection and treatment advance, while also delivering scientific breakthroughs for many other diseases. This investment has been significant for breast cancer. In the treatment of breast cancer, lumpectomy followed by local radiation has replaced mastectomy as the preferred surgical approach for treating early-stage breast cancer. The approaches to treatment, by learning critical differences among the types of breast cancer, with chemotherapy and hormonal therapies have allowed patients different options and more-personalized treatment plans.
It is estimated that half of all cancer deaths could be avoided through prevention. The Centers for Disease Control and Prevention (CDC) state-based cancer programs provide vital resources for cancer monitoring and surveillance, screening programs, state cancer control planning and implementation, and awareness. During last week’s Lobby Day, OVAC representatives requested $510 million for CDC’s cancer programs.
Included within this ask was a request was $275 million for the CDC’s National Breast and Cervical Cancer Early Detection Program (NBCCEDP) which provides access to breast and cervical cancer screening services to underserved women across the country. Since its inception in 1991, NBCCEDP has provided over 11 million screening exams to more than 4.5 million women, detecting more than 62,000 breast cancers, 3,400 cervical cancers and 163,000 premalignant cervical lesions. Despite the critical services this program provides, at current funding levels NBCCEDP only reaches a fraction of eligible women. OVAC’s funding request would allow hundreds of thousands of additional women to be served by this program.
Komen understands the difficult task in balancing competing budget priorities, but the only way to eradicate breast cancer is through a renewed investment and commitment to discovering and delivering the cures and improved access to affordable, quality and timely breast health screening and treatment services. We must continue to fight for the funding of these vital programs, not only for the more than 3 million breast cancer survivors we represent today, but those that will be touched by this disease in the future.
Click here to stay informed about Komen’s advocacy priorities moving forward.
Last week marked a milestone for Susan G. Komen when our community of Affiliates, partners and research scientists gathered in Ft. Worth, Texas to support the priorities and principles that will guide the Komen mission going forward. I was energized by seeing some of the world’s foremost breast cancer researchers, funded by Komen, working hand-in-hand with our network of community Affiliates and our corporate partners. There were hundreds of us representing the millions of us who want to end breast cancer, forever.
We left that meeting knowing that the first 32 years of our work have had meaning: death rates from breast cancer are steadily declining in the U.S.; five-year relative survival rates for early-stage breast cancers are at 99 percent. But we also left that meeting determined to do more, guided by new principles designed to foster new collaborations in our movement, expand our community outreach, and support a new generation of breast cancer researchers.
We call our new approach “A Promise Renewed.” It builds on the foundation of our organization – the promise between our founder Nancy G. Brinker, and her dying sister, Susan G. Komen – to end the disease that claimed Suzy’s life 34 years ago. Our renewed promise acknowledges our progress, and redoubles our commitment to see that mission fulfilled.
We reaffirmed our commitment to funding along the entire breast cancer spectrum: from prevention, to better and more sensitive early detection, and to more effective treatments for aggressive and metastatic forms of the disease. And to ensure that breast cancer research continues until we find cures, we are focusing more than half of our research dollars on young scientists this year, with a goal of increasing even that number by 30 percent. With federal and private research budgets tightening, we are deeply concerned that the next generation of researchers will become an endangered species, and we consider it our responsibility to do our part to keep promising young researchers from leaving the field because of the paucity of funding.
We also consider it our special responsibility to bring the benefits of the research and excellent care to people who need it. We do this through our Komen Affiliate Network, the largest grassroots network of any breast cancer organization, working in 117 U.S. and three international communities.
This Network is the heart and soul of the Susan G. Komen organization, working in our neighborhoods to reach those who are at high risk for poor health outcomes, to fund medical treatment and provide financial support such as insurance co-pays, surgical expenses, medical supplies – even the rent and groceries for financially strapped breast cancer patients and their families. Our Affiliates serve as a helping hand to the women, men and families facing breast cancer. We are determined to expand their work to more areas and to do so in the most efficient manner to create maximum impact for our donors’ dollars.
We also are committed to expanding our work beyond the 30 countries we serve in Africa, Asia, Latin America, the Middle East and central Europe, by building on partnerships that have created screening, treatment and outreach programs in regions of the world where breast cancer carries significant stigma, and screening and treatment resources are scarce. Breast cancer is growing exponentially in low- and middle-income countries, and Komen must be there to support meaningful partnership to stem a coming crisis.
Most importantly, we won’t do any of this alone. Komen has long understood the value of organizations working together toward noble goals: we already partner with thousands of community health organizations, nonprofits and research organizations around the world. We have helped create unique programs, some funded by our corporate and nonprofit partners, to fund research, global and community programs around the world. Our new priorities and principles will build on those collaborations and create new ones among breast cancer organizations, other nonprofits, governments and corporate partners to meet the challenges ahead.
These priorities are outlined in a document that I invite you to read.
While these are newer approaches to strengthen Susan G. Komen, they rest on a fundamental promise that will never change: our commitment to end breast cancer, forever, and to serve those who face it today, and for as long as they need us.
“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.
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.
Guest post by Cheryl Jernigan, CPA, 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
-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.