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  • Frustrated and Looking for Someone Who Understands

    By Jennifer Polo, Susan G. Komen Breast Care Helpline Specialist

    I’ve spoken with many callers in my last two years with the Komen Breast Care Helpline, and it’s not often we get calls from men. When we do, they are often calling on behalf of a wife, sister or friend who has been diagnosed with breast cancer.

    Rob, however, was an exception. He, like roughly 2,000 other men in the U.S. this year, was shocked to hear his doctor say, “You have breast cancer.”

    He called the Helpline feeling frustrated, embarrassed and alone. He needed support, and was unsure where to find it.

    Not only had he been diagnosed with breast cancer, but it was triple negative disease. This subtype of breast cancer is rare and very aggressive, and is not found very often in men. (Rob actually had good humor about this, saying that he thought it was pretty remarkable that his tissue was going to be collected and studied by breast cancer researchers.)

    Rob had just undergone a lumpectomy and eight rounds of chemotherapy. His surgery left him with what he described as “a hole in [his] chest.” Any time he took off his shirt in public, people would ask about the hole: what it was, why it was there, and what had happened.

    He found it difficult to talk about his diagnosis with his friends, who couldn’t really understand what he was going through. I was sad to learn that he had also reached out to his doctors to see if they could connect him with a support group, but they weren’t able to help. (Unfortunately, this is something we hear all too often from both men and women facing breast cancer.)

    Unwilling to give up, he called the Komen Helpline on a mission: to find a support group where he could speak with other men who have had experiences similar to his.

    Rob and I discussed a few nationwide organizations that offer support programs for men, making him feel comfortable – like he could finally meet people who could relate to him. He felt relieved, and was happy to hear that he was welcome to call us back any time with questions or just to talk!

    Rob may have been surprised to receive a breast cancer diagnosis, but he was determined to take care of every aspect of his health – an important message for all of us during Men’s Health Month. Being informed about your health, including your risk of breast cancer, is important for men, too. Some warning signs that men should be aware of are described here.

    Survival is highest when breast cancer is found early, so please don’t delay if you or a loved one notices a change in the breast or chest area. And remember, no matter how rare a breast cancer diagnosis may be, no man or woman should have to face breast cancer alone.

    If you have questions or simply want to talk with someone about breast cancer, please don’t hesitate to call us at 1-877 GO KOMEN (1-877-465-6636).

  • Hospitals, Researchers and Advocates Come Together to Push Progress in Clinical Trials

    Guest blog by Kari Wojtanik, PhD, Manager, Evaluation and Outcomes

    Treatment of breast cancer has greatly improved due to lessons learned through clinical trials. Thanks to researchers and the bold women and men who are willing to take a chance, for themselves and for the future of breast cancer treatment, clinical trials have allowed researchers to test the safety and benefits of new drugs, diagnostic methods and screening tests. Findings from clinical trials today directly impact patients and dictate the standard of care.

    For some patients, like our very own Karen Durham, a member of Komen’s Advocates in Science Steering Committee, clinical trials are an everyday part of life. For more than six years, she has lived with metastatic breast cancer that has been kept at bay thanks to therapies that are being tested in clinical trials. Her participation not only impacts her life, but the lives of others who may someday be diagnosed with this disease.

    For Karen and many others, the quality and pace of clinical trials are vital to continuing our progress in the fight against breast cancer.

    I recently had a ‘behind-the-scenes’ look at the importance of clinical trials and how they are developed at the bi-annual meetings of the Translational Breast Cancer Research Consortium, more affectionately known as the TBCRC, along with one of my Komen colleagues, Kim Sabelko.

    The TBCRC is a group of 17 cancer hospitals and research centers across 15 states  that conduct innovative breast cancer clinical trials.  It consists of oncologists, surgeons, radiation oncologists, scientists, statisticians, study coordinators, and patient advocates – all of whom provide input into the development of every trial run through the TBCRC. Komen is one of three key sponsors of the TBCRC, providing $10 million since 2007 in support of this unique group.

    The goals of the TBCRC are to speed completion of clinical trials, share data and ultimately provide real impact for women and men with breast cancer.

    During the TBCRC meeting, I not only learned about the great progress TBCRC clinical trials have made, but also about the issues and challenges faced by those conducting the trials. And it’s no surprise: it takes a village to conduct a trial!

    Cooperation among a diverse group of experts, from researchers to advocates, with an equally diverse set of resources, is crucial for conducting a clinical trial. People, time, money, medical supplies, support systems, and a clear plan for completing the trial are all part of the clinical research infrastructure. But coordinating all of these components can be a daunting task for a single hospital or cancer center.

    That’s where the TBCRC comes in. The TBCRC provides the infrastructure needed to help its members conduct meaningful, successful clinical trials across multiple institutions that other groups or institutions may not be able to.

    One example of this is a TBCRC trial on male breast cancer. Because male breast cancer is not common, finding enough patients at a single, or even a few institutions, to adequately power a clinical trial can be near impossible. By having 17 institutions across the country, the TBCRC can provide the infrastructure needed for the trial, and more patients can be accrued, strengthening results.

    Any researcher would agree: clinical trials are becoming much more challenging in terms of data collection and recruiting eligible patients.  As a result, many trials can either be too intensive or too large, or have too few eligible patients, for a single institution to conduct. Because TBCRC organizations work together, trials conducted through the consortium take place across several institutions, instead of just one, increasing the power of the trial results.

    “The TBCRC fills a space in the breast cancer world that was entirely vacant, and with the decline in federal funding, work done by the TBCRC is more important than ever,” says Eric Winer, MD, one of the founders of the TBCRC and a member of the Steering Committee, as well as Komen’s Chief Scientific Advisor.  “And you can’t underestimate the importance of bringing investigators together from across the country to discuss new and ongoing trials,” Winer adds.

    All TBCRC clinical trials are driven by the most pressing questions in breast cancer. Attendees work together to make sure that the trials conducted through the TBCRC will answer important questions,  successfully recruit patients, and are designed to get meaningful results. They are not dictated by the interests of the biotech or pharmaceutical industry. This is possible thanks to support from various sources, including Komen.

    The TBCRC also serves as a training ground for next generation of breast cancer clinical researchers. As funding for cooperative and other groups dwindles, opportunities for researchers to conduct trials also diminish.

    “Today, younger investigators have fewer opportunities than ever to propose new concepts and successfully test them in clinical trials. The TBCRC offers them a safe harbor where their ideas receive early input from more experienced investigators, thereby increasing the chances of successfully completing studies that could influence routine clinical practice and serve as the foundation for larger scale clinical trials,” says Antonio Wolff, MD, TBCRC Executive Officer and a member of its Steering Committee, and a Komen Scholar. Wolff emphasizes, “The opportunity to be a part of a successful team early on is critical to ensure that the brightest and most productive minds continue a career in breast cancer research.”

    One of the highlights of the TBCRC meeting was when a medical oncologist from the University of Michigan approached Kim and me to say, “Thank you.” She conveyed the importance of organizations like Komen in supporting the TBCRC, and passed on the sentiments of her patients, who appreciated participating in a TBCRC trial that is supported by an organization they know and trust.

    We’re proud to support the TBCRC, as its members work to accelerate the clinical trials process and change the way many women and men with breast cancer are treated in the future.

    Stayed tuned for future updates on the TBCRC and results from TBCRC trials.

  • 8 Things We Want Breast Cancer Survivors to Know Today

    At Susan G. Komen, we celebrate those who have faced breast cancer every day of the year. But today, the 28th annual National Cancer Survivors Day, got us thinking about everyone who has ever had their world turned upside down by the words, “You have breast cancer.”

    Here are eight things we want to make sure you know today, and every day:

    1.     You Are Not Alone

    In fact, you’re in the company of more than 3 million breast cancer survivors just in the United States! And millions of family members and friends who have gone to appointments, cleaned, babysat, cooked, carpooled and so much more while their loved one faced breast cancer. Spread some love today to those who were by your side as you faced breast cancer, and if you start to feel discouraged, check out these powerful stories from women and men who have been right where you are.

    2.     Life Is Different Now, and That’s OK

    Breast cancer survivor and Executive Director of Komen Greater Atlanta, Cati Stone, said it best in one of our recent blogs: “People think it’s ‘life as usual’ after breast cancer. But it’s not.” You’re not the same person you once were. You may have a new appreciation for life or a surprising ability to not sweat the small stuff. You may also need time to recover physically and emotionally, so don’t feel like you have to jump back into all of your activities right away.

    3.     That Lingering Fear…

    … of a breast cancer recurrence is totally normal. After breast cancer treatment ends, many people are afraid they still have cancer or that it will come back. The truth is, breast cancer can recur at the original site, as well as spread to other parts of the body. That’s why it’s critical to visit your health care provider on a regular basis following treatment. There are also certain steps you can take to reduce your risk of a recurrence (#4).

    4.     Healthy Choices Go a Long Way

    Maintaining a healthy weight, eating a balanced diet and getting regular exercise may help reduce your risk of a breast cancer recurrence. One analysis found that breast cancer survivors who got roughly three or more hours of moderate-paced walking a week had a 30 percent lower risk of death (from any cause) compared to less active survivors!

    5.     For Many, Cancer is the New Reality

    Women and men living with metastatic breast cancer don’t have the same treatment options as those who are diagnosed with early-stage disease. For many, the main goals of treatment are to control tumor growth and extend life, while trying not to compromise their quality of life. Metastatic patients need more: more support, more research, more awareness. To date, Komen has invested more than $133 million in over 350 research grants and clinical trials on metastatic breast cancer to understand the biology and find new treatments, while working with the Metastatic Breast Cancer Alliance and the Health of Women [HOW] Study to improve the lives of those with metastatic disease.

    6.     There’s Always Something New to Learn

    There’s a reason people say, “Knowledge is power.” By being thoroughly educated about your diagnosis, treatment and follow-up care, you can feel more in control of your life again. So, the next time you’re heading for an appointment with your physician, grab a pen and paper and consider asking some of these questions about survivorship.

    7.     It’s OK to Ask for Help

    Your journey with breast cancer may have brought with it a whirlwind of emotions – shock, fear, denial, sadness, anger. Thinking about insurance, finances or finding services can be overwhelming. That’s why there are programs and organizations that offer resources, support and guidance. And it’s OK to ask for help. Says one fellow survivor: “I learned that if I took a hand offered to me, there was no telling what gifts I would receive.”

    8.     We Consider You Part of the Family

    This organization was founded more than 30 years ago on a promise between two sisters. That’s now the promise we make to you and to the world – to end breast cancer, forever. We’re working each and every day to fulfill that mission, in laboratories and in communities around the globe. And every time you lace up your sneakers to Race for the Cure (or put on a pink tie, or bake pink cupcakes or support our partners), you’re making that work possible. Learn how you can support Komen in your neighborhood and join us online to celebrate survivors today and every day!

  • Chris Tannous…Queen of Advocacy and Hearts

    Blog by  Cheryl Jernigan, a Komen Scientific Advisory Board and Advocates in Science Steering Committee Member

    Sunday May 17, we received heart-breaking news. Our long-standing friend and colleague, Chris Tannous, passed away. Although a two-time breast cancer survivor, it was not breast cancer that took Chris’ life, but pulmonary fibrosis.

    Chris was simply the Jackie-of-all-advocacy-trades. There wasn’t an avenue, if even only slightly open, she didn’t explore in her quest to put an end to breast cancer. Not only was she a Komen advocate phenomenon, she diligently pursued her quest across many organizations, including the American Cancer Society (ACS), Y-ME and the National Breast Cancer Coalition.

    Chris’ legacy in Komen is wide and deep. Her wisdom, guidance and thoughtful work were evident at the Affiliate level, and in our global and research programs.  She was passionate about including the patient voice in breast cancer research, pioneering patient-focused efforts on our Scientific Advisory Board (SAB) and helping found Komen’s Advocates in Science (AIS).

    From the beginning, she skillfully exercised her advocacy and leadership skills, serving as a role model for many and leaving no stone unturned.  She was a volunteer and leader locally, regionally, nationally and internationally.  She rolled up her sleeves and did whatever it took to get the job done!

    Chris was intimately involved with Komen Orange County as a volunteer, board member, President and other leadership roles. The too-numerous-to-mention awards bestowed upon her over the years pay tribute to the substantial and inspiring impact she had within her Affiliate and her community.

    Chris Tannous with a delegation from the Breast Cancer Network Japan – Akebono-kai at the 2010 ASCO Annual Meeting.

    On the global front, Chris was one of our U.S. delegates to the 2007 Global Breast Cancer Initiative and Global Breast Cancer Advocacy Summit in Budapest, Hungary. In 2010, she participated in a roundtable discussion convened at the American Society of Clinical Oncology’s Annual Meeting to share best practices in patient services, outreach and education with the Breast Cancer Network Japan – Akebono-kai.

    She was also an advocate and co-author on a study that demonstrated a substantial difference in breast cancer risk factors and Gail scores (a commonly used tool to assess a person’s breast cancer risk) between Hispanics and non-Hispanic whites, and suggested different screening and prevention strategies to more effectively reduce or manage risk within each of these populations.

    Far from seeking the limelight, Chris just humbly and diligently pursued her passion to make a difference for breast cancer patients today…and tomorrow. Working with her was an absolute delight. Memories of her bright smile and unpretentious, dry sense of humor still bring a warm smile to many hearts.

    Her gift to quietly listen and understand others’ perspectives, unwittingly endeared most to her.  When she did speak, you knew her comments would be well reasoned and to the point.

    Although physically gone, Chris, you will never leave our hearts and minds. Your dedicated work and caring friendship remain an inspiration to many. And your legacy as a dedicated, collaboratively assertive pioneer in breast cancer research advocacy has laid a solid foundation for research and patient advocates to build upon in our work with researchers and clinicians to improve how patients feel, function and survive.

    Thank you, Chris! You have been a wonderful blessing to our world.

  • The ‘Omics’ and the Future of Cancer Research

    The following blog appeared in The Huffington Post on May 21, 2015.

    In 2014 Congress declared May as National Cancer Research Month to recognize innovative work being done to find cures for cancer in all its forms.

    Perhaps some of the most innovative work in the field being done today centers around genomics and related fields such as proteomics. They have given researchers new ways to understand susceptibility to cancer — especially breast cancer — and therefore new targets for treatment. Knowing how critical this work can be to ending breast cancer once and for all, Susan G. Komen has funded millions in research solely focused on identifying new genetic mutations in inherited breast cancer.

    We were proud to see our investment in breast cancer research pay dividends, as it did on April 27 when a study published in Nature Genetics reported the discovery of a new breast cancer susceptibility gene called RECQL. The study was led by Dr. Mohammad Akbari at the University of Toronto and Cezary Cybulski at Poland’s Pomeranian University. They were supported by important contributions from Susan G. Komen Scholar Dr. William Foulkes of McGill University in Montreal, who provided convincing data showing that RECQL is a breast cancer susceptibility gene.

    Once RECQL was identified, researchers analyzed genetic data from French-Canadian and Polish women who had been diagnosed with breast cancer, had a strong family history of cancer and/or a young age of onset, and lacked mutations in the BRCA1 and BRCA2 genes. Researchers concluded that the group was more likely to carry the RECQL gene mutation than a control group. In all, more than 25,000 women participated in the study. By working within two specific nationalities, the RECQL study can serve to spur further population-based research, which may, in turn, lead to the identification of additional genetic mutations.

    This is critically important, because breast cancer susceptibility genes and their associated mutations are difficult to identify. The hard work of discovering these genes must keep moving forward, because all the mutations in breast cancer susceptibility genes currently known account for only half of all inherited breast cancer risks.

    The knowledge gained by research must of course be shared with the public so that women (and men) can work with their healthcare providers to manage their risks and, if needed, take action.

    That’s why we were also excited in April to see Color Genomics join the ranks of researchers and companies working on an affordable genetic screening test for breast and ovarian cancer that requires only a sample of saliva to detect the presence of 19 cancer-risk genes, including BRCA1 and BRCA2.

    We are hopeful that these kinds of tests can be offered at low cost to eliminate financial barriers and expand access for women.

    But as we add to the store of available knowledge about breast cancer risk, it’s important to remember that this knowledge must be assessed carefully. Not all of the 19 cancer-risk genes identified to date pose the same level of threat. Genetic testing must be coupled with genetic counseling to help women understand their risks.

    The BRCA1 mutation is especially important to identify, as its carriers have a 55- to 65-percent chance of developing breast cancer by age 70 and are at higher risk for developing triple negative breast cancer, an aggressive form of the disease. On the other hand, many of the other cancer-risk genes pose a lower risk, which means a carrier of a specific gene might have a 20-percent greater chance of developing breast cancer.

    As new risk factor genes are identified, and as genetic testing for breast cancer risk becomes more accessible, that testing must be approached with the understanding that it empowers women to weigh their personal risks objectively and consult with their medical provider about possible courses of action.

    Our course of action is clear. As a nation, we must continue to support the work of researchers who are unlocking the genetic keys to breast cancer. Their efforts bring us ever closer, every day, to finding better treatments and cures.