The following blog appeared in The Huffington Post on April 29, 2014.
Most women — and every mother — are injury prevention/risk reduction experts. We buckle up our children; insist they wear bike helmets; read the labels on the foods we feed them. We are committed to their well-being, and we do everything we can to ensure healthy childhoods that are the foundation for happy lives.
Whether we’re chasing our kids down for soccer practice or helping them plan a wedding, we strive to provide for and to protect our kids. As a parent, it’s always a balancing act — sharing your own knowledge and experience while letting your children forge their own paths. Ultimately, all I’ve ever wanted for my kids — well, now they’re my adult “kids” — is for them to be independent, intelligent, capable and fulfilled.
This month, my eldest, Alyssa, turned 27, and with Mother’s Day just around the corner, it has me thinking about young women everywhere who are looking forward to many more fulfilling years. I am concerned that, when it comes to sharing what we know with our daughters, we face a challenge we did not anticipate. In our daughters’ lifetimes, the course of breast cancer has shifted. Where it was once almost invariably fatal, modern medicine, research, technology and more widespread education about breast cancer have helped reduce death rates and increase survivability for many forms of this disease. Almost 3 million women and men in the U.S. are breast cancer survivors.
Young women may face many immediate challenges to their health, and often don’t appreciate that they should also be aware of their breast cancer risks. Although that risk is very slight, it persists. Fewer than five percent of breast cancers occur in women under age 40 in the U.S.. However, breast cancer is the leading cause of cancer death in this country (death from any type of cancer) among women ages 20 to 59.
Right now, young women are staying late at work, working 60-hour weeks to earn a promotion. They’re starting their own businesses. They’re taking care of children, or maybe getting ready to start a family. Or maybe they’re taking care of a parent or grandparent.
Yet, breast cancer doesn’t care about any of that. It can affect anyone — regardless of age, gender, race, ethnicity or socioeconomic status. And I don’t want Alyssa, or anyone, to become complacent about this very serious disease that still claims a life every 60 seconds somewhere in the world.
While breast cancer risk is generally much lower among younger women, women who are diagnosed at younger ages are often diagnosed with more aggressive forms of the disease and often at later stages.
At Susan G. Komen, we say that women should “know what is normal” for their bodies. In young women, this is especially important. Unless someone is at high risk of breast cancer (a family history of the disease, for example), a woman under 40 is likely not getting a regular mammogram or any other imaging test. This should not, however, suggest that they shouldn’t be thinking about their breast health.
What I worry about is a scenario in which a young woman wakes up one day to notice a puckering or dimple in her breast, or maybe an itchy, scaly rash, and doesn’t give it a second thought. Or that this same woman, knowing something is wrong, will not act on her instincts if these symptoms are dismissed by a healthcare provider. Too many of our young breast cancer survivors were told, “You’re too young for breast cancer,” and although they felt something wasn’t right, they didn’t pursue a second opinion until the disease was more advanced and difficult to treat. I met a young woman last week who, at age 25, found a small lump and was told not to worry; three years later she was diagnosed with Stage III breast cancer.
We, as breast cancer educators and public health advocates, have worked diligently to educate the public about breast cancer, and these efforts have helped reduce mortality by one-third since 1990. But knowing what we do — that young women are often diagnosed with more aggressive and difficult-to-treat forms of breast cancer — I see an opportunity to increase our efforts to educate young women on their risk.
Other groups are taking action to address this issue as well. In fact, in 2012, the Centers for Disease Control and Prevention (CDC) convened an Advisory Committee on Breast Cancer in Young Women (ACBCYW), led by Komen Scholar Ann Partridge, M.D., M.P.H. The committee wrote, “Breast cancer among young women is a complex public health problem,” and it has a complex effect on the lives of women under 45 who are diagnosed with it. Women in these age groups worry about the impact of the disease on their ability to date, marry, have children, and embark on careers. Many have very young children, and worry about the impact of their illness on growing children.
The ACBCYW sent recommendations to the CDC and to former Secretary of Health and Human Services Kathleen Sebelius, focused primarily on the development of information and materials that are geared to younger women, providing accurate and valid information that is age-appropriate and culturally relevant.
Achieving this will be no easy task, but it’s what is required if we want to ensure that young women are informed about breast cancer and have access to quality treatment and support resources if they are diagnosed.
Komen has long funded programs that help women get the treatment and support they need. We have directed funds to promote research aimed at better understanding the basic science of breast cancer and development of better treatments, especially for the forms of breast cancer more commonly diagnosed in women under 40. We invite younger women to visit our website to learn about their risk, and to understand that as far as we’ve come in breast cancer awareness and treatment, this disease is not cured, and young women are not immune.
Going forward, we’ll continue our efforts to reach out to younger women about what they can do to take charge of their health. Information about breast cancer in younger women can be found on our website at this link.
As I celebrate another birthday with Alyssa, and think about Mother’s Day next month, I reflect on the years that she, her brother, sister and I have shared so far, and the years I hope to share. And it makes our work all the more urgent.
Guest post from Hannah Beaty, Marketing & Communications Manager, Susan G. Komen North Texas Affiliate.
The Susan G. Komen North Texas Celebration of Hope is an event where we honor survivors in North Texas, remember those who have lost their battle, and look forward to a new year of serving the North Texas community.
The day kicked off with a Health & Lifestyle Expo. Health care providers, spas, wig shops, and more joined our 2014-2015 Community Grants Recipients to display their products and services for our attendees to view.
The program began with a welcome from Komen North Texas and its Local Presenting Sponsor (and longtime sponsor of Survivor Programs at the Plano Race for the Cure), Alcatel-Lucent. After brunch was served came the highlight of our event – a fashion show featuring 12 incredible women who reflect the diversity and strength of North Texas breast cancer survivors. These women – mothers, sisters and friends – have all inspired hope within our Affiliate and throughout the community. “It was one of the most memorable events in my life!” said model Lisa Sun. Melissa Holder, another model, said “I know it took almost three years to talk me into doing this, but I am so glad you did!”
Following the fashion show, we were pleased to present “Komen In Action,” a segment which illustrated the work Komen is doing to combat breast cancer on all fronts: global programs, public policy, research, and community health.
Komen’s Chief Mission Officer, Chandini Portteus, spoke about the impact Komen has had on the face of breast cancer. “When our organization first began, the word ‘breast’ wasn’t even used – breast cancer was referred to as ‘women’s cancer,’” Portteus explained. “Today, with our advancements in treatment and early detection, early-stage cancer has a 99 percent survival rate.”
It’s thanks to early detection and advances in treatment that we can report such impressive and important information, but not everyone has access to screening, treatment or support services. In North Texas, our Affiliate works to serve nearly 1.75 million individuals, investing over $10 million in the North Texas community alone since our Affiliate’s inception in 1991.
And our work continues. We were pleased to introduce our 2014-2015 community grants recipients to attendees, and showcase the impact of our investments from the previous year. Thanks to support from the North Texas Community, over 2,200 North Texans received clinical breast exams, mammograms, and diagnostic services; more than 6,000 North Texans received breast health education; and more than 80 North Texans received treatment assistance. This year, we will be investing $500,000 in four local organizations providing lifesaving breast health education, screening, treatment, and patient services to the underinsured and uninsured men and women in North Texas.
But our work in North Texas goes even further, into programs like Teens for the Cure, Voices of Hope Survivor Choir, Education Committee, and more. Our Teens for the Cure provides middle and high school students the opportunity to plan and execute service projects benefitting Survivors, learn more about Komen’s mission, and become proactive and empowered when it comes to their own health. The Voices of Hope Survivor Choir is not only a beautiful collection of voices, but they also provide support and inspiration to each other and our community at every performance. Our Education Committee provides strategic direction for the ways in which we engage and serve our vulnerable populations.
The inspiring morning wrapped up with a Survivor recognition ceremony where we began by recognizing men and women who have died from breast cancer, while the Voices of Hope sang “Wind Beneath My Wings.” We were also delighted to recognize both the longest survivor, with 39 years of survivorship, as well as the youngest survivor, with two months of survivorship.
In total, there were 1,518 years of survivorship in the room, giving each of us all the more reason to continue this critical work and to keep celebrating hope.
Guest post by Ami Patel, Susan G. Komen Research Project Manager.
I recently traveled to the warm and sunny city of San Diego for the American Association for Cancer Research (AACR) Annual Meeting. It was a wonderful opportunity to understand our growing partnership with the AACR, and to appreciate the work being done to bring us closer to achieving our mission.
Throughout the course of the conference, it was an inspiring experience to see Komen representation in various forms, including Scientific Advisory Board (SAB) member, Dr. Carlos Arteaga, being inaugurated as AACR president. Komen’s support of the AACR Scientist-Survivor Program, Scholar-in-Training Awards and Breast Cancer Sessions were highly visible, along with our Komen Scholars and grantees presenting on research that was made possible through Komen funded support. Komen’s support for AACR’s Scientist-Survivor Program allows for partnerships and collaborations among patient advocates, cancer survivors and members of the scientific community.
Komen is focused on the future of breast cancer research, which was apparent at the AACR meeting through our support of the Scholar-In-Training Awards. The Scholar-In-Training Awards are financial support, provided to young investigators to enhance their education and training through conference attendance. AACR showed their support for this important work as well, selecting their “NextGen Stars;” young researchers who were invited to present their research. One of these outstanding young scientists was Dr. Priscilla Brastianos; a Komen funded Postdoctoral Fellow, who presented alongside Komen Scholars, Dr. Nancy Hynes and Dr. Danny Welch, about the Novel Mechanisms of Metastasis. Dr. Brastianos shares more about her work in a recent episode of Komen TV.
Collaboration seemed to be an ongoing theme during this conference. It was evident in the Love Army of Women Panel Discussion, where our work through the Komen Tissue Bank was presented. The Tissue Bank is an important resource for researchers around the globe, as it’s the only tissue bank with both healthy and cancerous tissue samples. Through collaboration with the Tissue Bank, and the thousands of tissue donors from across the globe, researchers can find resources they need to continue with their work to end this disease.
The Komen Advocates in Science (AIS) demonstrate the potential of collaboration as well, lending a patient’s voice to important research discussions. Komen AIS member Terri Martyka presented a poster on Research Advocacy and the critical roles that advocates play in our mission, as part of her participation in the Scientist-Survivor Program.
At the Komen exhibit, it was exhilarating to not only meet researchers, but also to meet individuals who stopped by to tell us that they participate in activities that support breast cancer programs in their own communities, such as the Susan G. Komen Race for the Cure® and the Susan G. Komen 3-Day®. These individuals understand the importance of our work to end breast cancer forever.
Attending this conference, as a representative of Komen, was an amazing experience for me. Through our work in research, community health outreach, education and advocacy, we are truly moving closer to our vision of a world without breast cancer.
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.
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.
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!