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  • Taking Control When Things Feel Uncontrollable

    There are life-changing, joyous moments you never forget: the birth of a child; a wedding; a graduation. Then, there are moments you never forget for the opposite reason, such as the memory of discovering you have cancer.

    It was 30 years ago this month that I first felt the lump. While women weren’t routinely performing self exams on their breasts in 1984, things were different in my family. It was just four years earlier that my beautiful sister Suzy had died after a three year fight against breast cancer. Since then, I had helped create an organization in her honor to help find a cure for the disease.

    Through my work there, I had access to many resources and experts, and had learned a lot about breast cancer, including that it could be genetic.  But even with all that information, nothing prepared me for the grim feeling when, one evening, my hand casually brushed against my breast and I felt that lump. I had discovered lumps before, had them tested, diagnosed as benign, and been on my way. I sensed immediately this one would be different.

    It was harder, and similar in size and shape to the lump that my sister first discovered in her own breast. .

    In 1984, I knew as much about breast cancer as anyone outside of the medical or scientific profession could know. I had watched my sister die from breast cancer, then spent several years educating myself and other women about the disease. Yet even with all that knowledge, I still felt scared and intimidated.

    I visited one of the top doctors I’d been introduced to through my work  and  had seen regularly in the past. His reaction was to adopt a ‘wait and see’ approach. I was skeptical but ultimately agreed, because he was the expert.

    The next day, I was scheduled to speak at a Susan G. Komen event. As I rose to address the women gathered, my notes that we needed to take responsibility for our own breast health stared back at me: “We can’t just take a physician’s word for it […]Just as a business hires consultants, you look to your own physicians to provide you with an expert opinion, but ultimately the decision is yours.”

    I was embarrassed. Here I was telling women to take responsibility for their health, even as I went against my own best judgment with mine.

    I hurriedly scheduled another appointment to get a second opinion. There too,  I was told that ‘wait and see’ was best.

    About 10 days later, the lump felt bigger. I went back to my doctor and told him in clear terms that I wanted this lump out, now. The next day he performed an outpatient lumpectomy, and he told me he would have the tissue tested but felt confident it would be good news.

    It wasn’t.

    The tumor was malignant. I had breast cancer. The years at Suzy’s bedside came rushing back to me – the questions without answers, the suffering, the empty reassurances, and I thought of my parents, who would face another long battle with another daughter. As the doctor began walking through my treatment options, my resolve grew. “I want them taken off,” I said, now.

    My desire to have a mastectomy was immediately resisted by my doctor who recounted all the reasons not to do it: it was caught early, there were other options, it was not “necessary.”He was an expert and a good man, but he wasn’t me. This was my choice. I was lucky to have seen and read enough to know how I wanted to wage this battle, and soon I was in an operating room about to lose a part of me.

    The doctors were entitled to their opinions, but I was entitled to my decisions. I’m still amazed at how easy it would have been to lose control of my own health amidst the sea of information and the fear that such a diagnosis brings. At least I was able to regain control of the process and had the resources to rightly follow my intuition, even if I sometimes had to be assertive.

    In the past 30 years, we have made enormous gains in raising awareness about breast cancer, but too many women facing this disease still feel like they don’t know enough, or may leave important decisions to their doctors. As a survivor, I understand this process and the wide range of emotions involved. I also know how imperative it is that we overcome this, by continuing to provide access to information and resources for those that face this disease, and their families.

    When I read criticisms of breast cancer awareness or hear people say there is “too much pink,” I think about the 1.7 million women worldwide every year who face their own life-changing news: discovering a lump, or finding out their tumor is malignant. I think about the quick decisions they will have to make, and the information that will be thrown at them. I think about the fear they experience not just about having cancer, but about having no clue on how to proceed.

    And when I think of the 40,000 American women who die of breast cancer every year, I think: there isn’t too much pink. There’s not nearly enough.

  • Advising the CDC on Breast Cancer in Young Women

    Guest post by Susan G. Komen Managing Director, Health & Science Education, Health Sciences Susan Brown. 

    I spent the last day and a half at the Centers for Disease Control and Prevention (CDC) offices in Atlanta working with a group of experts from a variety of disciplines, all focused on making a difference for young women at a heightened risk of developing breast cancer.  Of course, Komen’s interest in understanding and addressing breast cancer issues in young women isn’t new to us – it is part of our mission!

    The CDC convened an Advisory Committee on Breast Cancer in Young Women (ACBCYW) in 2011, chaired by Komen Scholar Ann Partridge. The EARLY Act authorizes the CDC to develop initiatives to increase knowledge of breast health and breast cancer among women, particularly among those under the age of 40 and those at heightened risk for developing the disease.

    The ACBCYW helps the CDC develop evidence-based approaches to advance understanding and awareness of breast cancer among young women.  The approaches include working through prevention research, public and health professional education and awareness activities, and emerging prevention strategies.

    Two work groups were formed from the initial meeting in 2011 – an ad hoc provider workgroup and an ad hoc high risk workgroup, and Komen is pleased to have been involved with the committee from the very beginning.

    I joined the high risk work group in 2012. We worked independently, with other workgroup members, and by phone and email to gather information to develop an understanding of the meaning of “high risk” of breast cancer in young women. We also worked to identify potential evidence-based messages to disseminate to this population. At the same time, the provider workgroup was considering ways to reach providers with the information they needed to communicate with these young women.

    The ADBCYW sent a recommendation to the Secretary of the U.S. Department of Health and Human Services, The Honorable Kathleen Sebelius in May 2013. The letter described breast cancer in young women as a complex public health problem.  Specific recommendations included that the CDC (1) identify and communicate effectively with young women at elevated risk; (2) support the development and utilization of strategies to engage providers to identify and communicate with young women at elevated risk; and, (3) engage patients and providers to highlight and address the issues unique to young women facing breast cancer.

    I am thrilled to report that the CDC has been able to use some the findings of our workgroup to develop a campaign that will be started in the coming months! Stand by and look for focused communications for young women at heightened risk of breast cancer!

    We also realized that there was more work to do – young women who aren’t at “heightened risk” (which is a somewhat vague term anyway) need messages too!  As such, a third workgroup was formed specifically to address that issue, while we continue to address unfinished work: collecting materials for women at high risk and looking at emerging research about the correlation between awareness and knowledge so that we can recommend strategies that tie the two together!

    Click here to see the meeting agenda and learn more about this important work.


  • Fulfilling Our Promise to Women around the Globe

    I’m always appreciative for the opportunity on International Women’s Day to step back and review the progress and challenges ahead for the world’s women. And in my view, few issues are as important as women’s health, especially in developing and low-resource countries.

    The progress that’s been made against HIV/AIDS, malaria, tuberculosis and maternal health in low- and middle-income countries has been impressive in just a few short decades. Now, the International Association for Research on Cancer estimates that cancer will grow exponentially over the next 25 years, and its impact will be especially difficult in the low- and middle-income countries with the fewest resources to deal with it.

    When I promised my sister, Suzy, that I would do everything I could to end breast cancer, I knew even then that we had to take our promise everywhere, especially to places where women with cancer often have no defenses, no advocates, and little understanding of what they are up against. But I never dreamed that Susan G. Komen would one day be working in 30 countries, investing millions into research and outreach to help the most vulnerable women of our world.

    Their stories are heartbreaking: In my travels, I’ve held the hands of women who arrive for treatment with tumors breaking through their skin. Some travel for days to get medical attention. Others face shame and stigma from a cancer diagnosis, especially a breast cancer diagnosis, which in some regions of the world means women may be separated from their families or otherwise ostracized.
    Susan G. Komen’s international work stems from our heartfelt belief that where a woman lives shouldn’t determine whether she lives. And so we expanded our mission outside of the United States 20 years ago, with our first research grant in Israel. Since then, we’ve invested $46 million in international research and more than $31 million in programs that reach – and help – the women who need us outside the U.S.

    We have many success stories from this work.  We’re proud to be a founding member of the Pink Ribbon Red Ribbon® initiative – formed in 2011 to address cervical and breast cancer through existing platforms for HIV/AIDS screenings and treatment in Africa and Latin America. The founding partners were the George W. Bush Institute, the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), and the Joint United Nations Programme on HIV/AIDS (UNAIDS), with corporate and foundation members. With initial commitments of $85 million across five years, Pink Ribbon Red Ribbon’s goals are to reduce deaths from cervical cancer by 25 percent among women screened and treated through the initiative; reduce deaths from breast cancer by promoting early detection, increase access to HPV vaccinations, and awareness of breast and cervical cancer prevention, screening and treatment, and to reduce stigma. Very importantly, our goals are to create models that can be used globally.

    We’re also pleased to work in partnership in Latin America, where Susan G. Komen and the Caterpillar Foundation have been partnering for years to improve detection of breast cancer and save lives. We’ve increased awareness, strengthened health services, and removed barriers to access in many program communities.

    I am proud that our Latin America programs have helped more than 7,000 women access breast cancer screening services – many for the first time!  We have also reached more than 3.5 million women through breast cancer awareness campaigns, trained more than 1,100 medical providers on breast cancer concepts, and educated more than 21,000 community members on breast self-awareness.  We’re on a mission to save lives in Latin America.

    In the Caribbean, we were shocked to learn that 48 percent of Bahamian women are diagnosed with breast cancer under age 50, and that not only are 50 percent of Bahamian women with breast cancer diagnosed with stage III or stage IV, but 23 percent of these women carry the BRCA1 gene mutation – the highest known population in the world to carry this mutation.  In 2012, we launched our first public/private partnership in the Bahamas, with the Government of the Commonwealth of The Bahamas and Sunshine Insurance Marathon Bahamas, to form the Breast Cancer Planning Committee. The BCPC is working to coordinate breast health efforts and strengthen health systems.

    Those are just a few examples of programs we’ve launched in Africa, Asia, the Middle East, Latin America, the Caribbean and central Europe. We can’t afford to slow down in our global race against this disease. We must keep fighting – and be hopeful!  Progress can be made, as our work in the U.S. attests. Five-year survival rates for early stage breast cancers (those that have not left the breast) are at 99 percent today, versus 74 percent when we started our work. Death rates from breast cancer have declined by 34 percent since 1990. We’re now focused on treatments for metastatic disease, and ways to prevent breast cancer. And we won’t rest until we’ve brought cures, and an end to breast cancer, wherever we find it.

    It’s taken 30 years – so far – and we have a duty to share all that we have learned and accomplished with women all over the world.

    In so many areas of global health diplomacy, certainties are hard to come by. But I can promise you this: If we turn more of our energy and resources on the global cancer crisis, we can move faster toward saving more lives.


  • Komen’s Travel Scholarships Make A Difference at C4YW

    Guest post by Jacqueline McKnight, Scientific Programs Specialist at Susan G. Komen

    I recently attended the final C4YW, the Conference for Young Women Affected by Breast Cancer.  This amazing conference has been organized by Living Beyond Breast Cancer (LBBC) and the Young Survival Coalition (YSC) for 13 years.  Since 2008, Susan G. Komen has provided sustained support as Lead Sponsor by funding the travel scholarship program. Over the years Komen funding has helped over 2,200 young survivors attend the conference.

    The conference offered a variety of scientific and quality of life issues that uniquely face young survivors such as family planning options, breast reconstruction, talking to your children about your diagnosis and balancing career, family and treatment.  There were also many opportunities for networking and time to have fun including the Saturday night dance party or Sunday morning Party in Pink Zumba event.

    Komen had a vibrant presence throughout the conference.  Our Chief Mission Officer, Chandini Portteus, offered an overview of Komen’s commitment to young women ranging from research to the work of our Komen Scholars and our partnership with Zumba. In the exhibit hall, Komen Affiliate members from Central Florida and Philadelphia joined with headquarters’ staff to provide fun and educational materials. Additionally, attendees included members and constituents of several Komen Affiliates and at least two Advocates in Science members.

    Attendees Gwendolyn and Tanya came by the Komen booth Friday afternoon.  Watching the two of them, I assumed they were life-long friends or maybe even sisters.  When I asked how they knew each other, they shared their story, at times speaking in unison, at others speaking over each other to make sure I was getting the most salient points.  Gwendolyn and Tanya met at C4YW in 2008. Recipients of Komen travel scholarships, they arranged to share a hotel room through the C4YW travel board.  They became fast friends and have attended the conference together ever since.  Their friendship transcends cancer and C4YW – they speak on the phone and have visited each other’s homes in different cities.  This year, it was especially important for the two women reunite at C4YW because Tanya recently found out that her cancer returned and metastasized.  Telling their story, Gwendolyn and Tanya laughed, cried, and laughed some more.

    This has always been the essence of C4YW and one of the reasons that I am so proud that Komen supported the conference for the past six years.  First year attendees are often heartbroken by their diagnoses, overwhelmed by the information and often hesitant because it seems oxymoronic to enjoy a conference about breast cancer.  There are tears, and there is anger at the injustice of a diagnosis of breast cancer so early in life, but there is also joy. My wish is that all of the attendees at this year’s C4YW were cleansed by their tears, embraced their joy and turned their anger into passionate advocacy for themselves and others like them.  And I hope that every attendee at C4YW found her Tanya or her Gwendolyn – a true friend, a supporter who understands what she is going through and a hand to hold while navigating the journey.

  • Triple Negative Breast Cancer Day

    For many years, we thought of breast cancer as a single disease whose severity was once measured by the size of the lump.  Millions of dollars in research later, we know better.  Breast cancer isn’t one disease as we once thought, but a family of diseases – some aggressive, some advanced, some deadly – and all requiring our best efforts to treat and cure.

    One of those aggressive forms is triple negative breast cancer.  It may surprise you to know that triple negative breast cancer wasn’t officially recognized as a distinct type of breast cancer until 2006 – less than a decade ago.  It is a form that disproportionately affects young women, women with BRCA mutations and black and Hispanic women. It is also more likely to spread to other parts of the body than other types of breast cancer.  It accounts for only about 15% of all breast cancer cases, but roughly 25% of breast cancer deaths.

    The term “triple negative breast cancer” (TNBC) sounds more specific than it really is. In fact, TNBC is really defined by what the tumor is NOT. These tumors lack the receptors – estrogen (ER), progesterone (PR), and human epidermal growth factor 2 (HER2) – that drive the majority of breast cancers. The absence of these receptors means that TNBC tumors are unlikely to respond to therapies that target these three receptors, including hormone therapies like tamoxifen and HER2-targeted therapies like trastuzumab (Herceptin).  There are no targeted therapy options for TNBC patients, and cytotoxic chemotherapy (therapy that kills both normal and cancerous cells) is the standard of care.

    There is an urgent need to find specific, targeted therapies for TNBC.  This is why Susan G. Komen has invested more than $74 million in over 100 research grants focused on this breast cancer subtype to change the landscape for these patients.

    In 2009, Komen and the Triple Negative Breast Cancer Foundation announced a partnership to confront triple-negative disease head on: pledging a total of $6.4 million over five years to fund research to support the discovery of new TNBC treatments. Read more about how Promise Grant recipient Dr. Andres Forero is using these funds to expand treatment options for TNBC patients.

    Another groundbreaking project, led by Komen Scholar Dr. Jennifer Pietenpol and funded by Komen and the Milburn Foundation, led Dr. Pietenpol and her team to identify six different subtypes of TNBC. Collaborating with researchers at MD Anderson Cancer Center, the Pietenpol group analyzed how the newly-discovered TNBC subtypes responded to different chemotherapy regimens, finding that response rates to treatment varied substantially by subtype. Identifying these subtypes could potentially lead to better outcomes for individuals with TNBC.

    Dr. Pietenpol’s team is committed to learning more about TNBC and expanding knowledge and treatment options for patients who are diagnosed with this aggressive breast cancer. They have developed a web-based tool that can help other researchers determine TNBC subtypes in their own samples.

    This year, they will oversee two clinical trials that will test new, targeted treatments for the TNBC subtypes – the first of their kind to assign treatment to TNBC patients based on a predictive biomarker test.

    Today, March 3, marks the second annual Triple Negative Breast Cancer Day – a national day of awareness and grassroots fundraising efforts, organized by the Triple Negative Breast Cancer Foundation, to help eradicate triple negative breast cancers and assist those impacted by the disease. Komen is pleased to be partnering with Triple Negative Breast Cancer Foundation to support TNBC research and all individuals facing TNBC.

    The work we have achieved – both individually and together – is leading the way to better treatments, and ultimately, more lives saved from this terrible disease.

    Help invest in the future of triple negative breast cancer research by showing your support today.

    More about TNBC:

    Read the story of TNBC Survivor Tracy Bunch
    Komen’s investment in TNBC research
    Facts about TNBC
    Learn about our investment in metastatic research