Twelve years ago, when I walked up to the registration table in St. Louis, Missouri, I signed up to volunteer for the upcoming Race for the Cure in memory of my mother-in-law Carolyn Gill who passed away from breast cancer.
But that was only the beginning. My breast cancer journey continued with my mother, my aunt, and then with my own diagnosis in 2011. No one wants to hear, “I am sorry to tell you, you have breast cancer,” but volunteering and being a part of the Komen St. Louis family made hearing those words so much easier! I reached out to Helen Chesnut, Executive Director of Komen St. Louis, right after my diagnosis because I felt lost. My mother was in the midst of her breast cancer diagnosis (her breast cancer surgery came one month before mine), so she could not be there for me – neither physically nor psychologically. She could not handle both our diagnoses.
Helen was always just a phone call or email away. She was by my side, helping me vet my doctors and navigate the healthcare system. She was the first individual I met who was truly a “survivor and a great advocate.”
Helen was one of the reasons I jumped at the opportunity to bea member of Komen’s Advocates in Science (AIS). I am merely giving back the excellence and servant leadership that was given to me four years ago.
As an AIS member, I have participated as an advocate reviewer in the peer review process that Komen conducts each year as to determine which research grants will be recommended for funding. I am completely in awe of the brilliance in the breast cancer research community. We often hear the daunting breast cancer statistics, especially for African-American women, but being around such brilliant and passionate researchers and advocates showed me that all hope is not lost! I came away from the review process simply excited as a survivor and an advocate.
It is important to me that others, particularly African-American and Hispanic/Latina women, have this same hope if they are diagnosed with breast cancer. My mother’s reaction to her diagnosis is how many women in our community react. She is the rule; not the exception. This
passion drove me to found Supporting Our Sisters International, Inc.. Our mission is to support our African-American and Hispanic/Latina sisters with a message of health, hope, healing and quality care. We are dedicated to improving knowledge and access across the continuum of cancer care, and we are helping women adapt healthier lifestyles in order to help reduce the risk
of breast cancer recurrence. Many studies show that weight gain is a risk factor for breast cancer after menopause, and women who engage in regular physical activity have a lower risk of developing breast cancer compared with women who are sedentary. It is our goal to help create informative change within the breast cancer movement.
The best practices Komen incorporates into its work have been highly influential in how Supporting Our Sisters International carries out our mission. We have incorporated many of the great values learned during my years as a volunteer, through my personal experience, as well as from my experience as one of Komen’s AIS members. I am excited to be a part of the survivor advocacy community – both as an individual and through Supporting Our Sisters International. We are excited to develop and implement new resources for women facing breast cancer, and be a voice for survivors.
It will take all hands on deck to save lives and end breast cancer, and I am honored to be on board!
By Elaine I. Grobman, Chief Executive Officer, Susan G. Komen Philadelphia
Twelve years ago, Komen Philadelphia hosted the very first Sisters for the Cure event. At that time, the Centers for Disease Control and Prevention reported that breast cancer was the second leading cause of cancer death among African-American women, and they were 31% more likely to die of the disease than their white counterparts. To address the need and disparity, we welcomed a few hundred African-American women, and accomplished exactly what we set out to do: educate women on the basics of breast health, lift the taboo and encourage conversation about breast cancer, assure each African-American woman that she is never alone in her fears, and connect women in need with free resources such as mammograms.
Initially, my thought was to develop this event as an annual educational opportunity for the African-American community. However, it became evident within just a few short years that this event generated much greater promise than we could have ever expected.
This year, on Dec. 6, we had the honor of celebrating our twelfth year for Sisters for the Cure. As I took in the experience and reflected on years past, I thought of those infamous words, “It takes a village.” I realized that Komen Philadelphia didn’t simply just embark on another annual event in 2002… we came together as a village! Our Sisters for the Cure event acts as a sanctuary for women alone and in fear, a sorority of support across generations, a hub for breast cancer resources, a community center for sharing hope and celebrating empowerment, and a fortress standing defiantly and confidently in the fight against breast cancer.
Granted, this village didn’t appear overnight, and it’s nothing Komen Philadelphia built alone. Each year, we welcome a diverse group of women of all ages and backgrounds. You’ll find women ranging from age 20 to age 70. Some of these women are caregivers, some are survivors. You’ll find women in higher-economic brackets, and mothers who never considered a mammogram because the money was needed to feed her family. The women drawing strength from Sisters for the Cure are at different levels of their understanding of breast cancer and varying stages in their journeys – yet they are equal in the sisterhood.
As the breast cancer movement has progressed, so has Sisters for the Cure. While “breast health 101″ is still very important, we receive questions on a number of topics – survivor support, triple-negative breast cancer studies, advances in plastic surgery, the latest information on early detection and more. As research has shown us, the breast health/breast cancer needs of African-American women can be very unique. Thus, Sisters for the Cure is more specialized, too, integrating healthcare providers, researchers and educators, psychologists, social workers, benefits experts, and many more.
Finally, we learned early on that if we were to ask women to make breast heath practices a part of their everyday life – to live in the village of empowerment year-round – WE had to make THEIR everyday life a part of our dynamic. That is why every Sisters for the Cure event will embrace spirituality and prayer, music and artistic expression, and ample time for making and enriching friendships.
From now on, when anyone asks, “Elaine, why did you start Sisters for the Cure?” my answer will be a simple, yet powerful, “Because surviving breast cancer as an individual and as a society takes a village.” I know with the utmost certainty that what we’ve created is hope for an entire community, instilling the confidence that women CAN survive breast cancer.
Guest blog by Cheryl Jernigan, C.P.A., F.A.C.H.E., a Komen Scientific Advisory Board Member, Advocates In Science Steering Committee Member and an 18-year breast cancer “thriver.”
Metastatic disease (breast cancer that has spread beyond the breast to other organs in the body) is what kills cancer survivors – like my two friends earlier this year. Why can’t we stop it?! Despite what we learn, what we throw at it, metastatic disease all too often finds a way to immediately or eventually evade our efforts.
Maybe it was the loss of these special friends that had me on high alert. But as I attended the 2014 San Antonio Breast Cancer Symposium (SABCS), it seemed to focus a lot more on metastatic breast cancer this year.
I didn’t hear many answers; only more questions. Except, unlike previous years, there were an amazing number of conversations and presentations aimed at understanding and tackling this multifaceted and perplexing disease.
Most metastatic breast cancer cells go unnoticed
In a pre-SABCS advocate conference sponsored by the National Breast Cancer Coalition, Komen grantee Dr. Alana Welm from the University of Utah shockingly noted that about 30 percent of breast cancers have already spread beyond the breast (spread to nearby lymph nodes) at the time of diagnosis.
To date, our most successful attempts to stop these undetectable cancer cells has been with chemotherapy and anti-hormonal therapies, like tamoxifen. Yet some still evade treatment and pop up in the not-too-distant future. Some others lie dormant for years. What wakes them up?! Can’t we just keep them sleeping… or at least not growing?
Even within our own bodies, breast cancer is diverse
First up, as possible solutions, were targeted therapies that interfere with specific targeted molecules cancer cells need to grow. Targeted therapies are usually less toxic and more effective than conventional chemotherapy.
Sounds simple enough to just “target” what’s driving the cancer. Except breast cancer is heterogeneous, meaning the cancer cells are very diverse at the genetic level (even in the same person and in the same tumor site).
In a special presentation for Advocates in Science, Komen Scholar and grantee Dr. Judy Garber explained that distant metastases have a much higher genetic diversity than those cells in the breast or in the surrounding lymph nodes. I was struck by how vastly different (molecularly) cancer cells could be in a woman’s liver vs. her spleen. Just take a look at this image from SABCS! (Figure 1)
We now know EVERY tumor is different. So much so, it’s impossible to develop drugs that will be effective in a large number of people. Gone are the days of hoping for a “magic bullet.” The good news from SABCS is there are a growing number of targeted therapies that may present new effective treatment options for metastatic breast cancer.
But what if a person’s cancer has multiple, evolving targets?
Enter the hope of immunotherapy
Immunotherapy is a treatment that uses our bodies’ own natural defenses to fight the disease. These treatments train our immune system to recognize viruses and cancer cells in our body in order to seek and destroy! The research to-date on immunotherapy holds a lot of promise, as well as some cautions.
On the plus side, when compared to chemotherapy, immunotherapy may have more therapeutic potential for patients such as being able to get treatments for longer periods of time with less possibility of developing resistance to the therapy.
Some questions that still need to be answered are: how do we more effectively identify patients at higher risk for metastases vs. those whose cancers are unlikely to become problematic? What are the short, intermediate and long-term immune-related side effects or toxicities?
More research is needed
As mentioned several times during SABCS, no one can yet predict if I (or you) will develop metastatic disease. Over 40,000 women and men die each year from breast cancer. Metastasis is the cause for virtually all. The majority of newly diagnosed metastatic breast cancer patients had early-stage disease 5, 10, 15, or even 20 years earlier.
Because metastatic disease is very different from early stage disease, more research aimed specifically towards metastatic breast cancer is needed. Only seven percent of the $15 billion invested in breast cancer research from 2000-2013 was focused on metastatic breast cancer. Komen has invested more than $98 million in over 200 research grants and 25 clinical trials focused on metastatic breast cancer since 2006.
Yes, advances are being made – just not fast enough. We need to put an end to metastatic disease before it puts an end to more of us!
Percent of Cases by Stage, Regional Cases, SEER 18 2004-2010, All Races, Females by SEER Summary Stage 2000
- Komen is a proud member of the Metastatic Breast Cancer Alliance. Read their comprehensive landscape analysis report showing the need for more research and patient services to improve outcomes for MBC patients.
- Read a recent Komen Perspectives article on living with metastatic breast cancer.
- Visit komen.org for more information about metastatic breast cancer, tests for metastases, treating metastatic breast cancer and information about clinical trials.
The following blog appeared in The Huffington Post on January 26, 2015.
One very encouraging proposal in President Obama’s recent State of the Union is the commitment to greater federal investment in biomedical research, including precision medicine and genomics research.
Although specific details of the president’s plan have yet to be released, additional funding in biomedical research holds significant promise for new and effective treatments and prevention approaches for cancer and a host of chronic conditions.
It also is a welcome change from the recent declines — in real, spendable dollars — in federal research budgets, which, of course, includes cancer science.
Federal cancer research funding, which grew significantly after our national “War on Cancer,” initiated by President Nixon in the 1970s, has remained relatively flat in recent years, leading to reductions of about 25 percent for the National Cancer Institute (NCI) in the past decade. This reduction has translated into $10 billion fewer dollars for cancer research since 2003. (See NCI’s budget analysis here.)
This reduction, if allowed to continue, has troubling implications from both a scientific and public health perspective. Some question whether research investments have yielded results in our war on cancer. The realities are that cancer death rates have declined by 22 percent between 1990 and 2011, according to NCI, with the American Cancer Society reporting that 1.5 million cancer deaths have been avoided in the past two decades.
These declines are attributable in large part to almost exponential progress in molecular biology and genomics that have enhanced our understanding of how cancer develops and spreads. This has led to more-effective (and often less-toxic) cancer treatments, and ushered in the era of precision medicine – where we’ve moved away from a “one-size-fits-all” approach to cancer treatment and instead are developing approaches tailored to individuals.
The pace of this research has led to striking changes in breast cancer treatment. In just one generation, we have moved from approaching breast cancer as one disease with one standard set of treatments, to a time when we know that breast cancer is a family of diseases, each with different characteristics — and each requiring tailored and often individualized approaches. Better treatments and more treatment options have followed, as has science-based knowledge of risk reduction and the role of early detection and early treatment.
As a result, breast cancer death rates have declined by 35 percent since 1990.
As our population gets older – many more cancers occur in later life – there is an even greater need to build on the progress of cancer research, which is best achieved with leadership and investment from the federal government, and continued investment by philanthropic organizations and industry.
The return on this investment, economically and socially, is significant. In a Jan. 13 article in JAMA, NIH Director Francis Collins notes that the U.S. government’s $3.8 billion initial investment in the Human Genome Project “has resulted in nearly $1 trillion in economic growth — a 178-fold return on investment.” He also noted a 140-fold return on investment on NIH’s $250 million investment in the Women’s Health Initiative’s estrogen plus progestin clinical trials.
Investment today ensures continuity in cancer research for tomorrow. Early-career researchers have been especially disadvantaged by tightened federal budgets. With fewer dollars available to new scientists, many have been forced to leave biomedical research all together, in search of greater financial and career stability.
Nonprofit funders like Susan G. Komen and others work hard to fill the gaps left by these declines. Komen, as the largest nonprofit funder of breast cancer research outside of the U.S. government, invested half of its research portfolio in 2014 to early-career researchers and we hope to do more this coming year. But philanthropic organizations alone cannot fill the gap left by declining federal dollars: only a renewed federal commitment of significant proportions can assure the promise of the next generation of cancer researchers and, indeed, of cancer research itself.
President Obama said he wants “the country that eliminated polio and mapped the human genome to lead a new era of medicine — one that delivers the right treatment at the right time.” We agree, and will work with others toward a renewed federal commitment to biomedical research to achieve this goal.
The Susan G. Komen® Puget Sound Affiliate recently embarked on a remarkable journey to expand Komen’s mission by addressing breast health disparities in the culturally diverse sectors of their service area. To support our mission, Komen Puget Sound sought out the translation of Breast Self-Awareness Messages cards in five East African dialects, thanks in large part to their partnership with Goodwill Seattle.
Goodwill Seattle worked with Komen Puget Sound to specifically target translations in Tigrinya, Amharic, Oromo, Swahili and Somali for their staff and case managers who often work with immigrant students in their ESL and job training classes.
For Komen Puget Sound, outreach and education to African immigrant groups is a common need that has been identified through focus groups and key informant interviews. In approaching the Komen Headquarters Education team about developing new Breast Self-Awareness Messages cards, their first priority translation was Tigrinya. Komen HQ and Puget Sound worked together to complete the translation process, and the next step was to find a community member who could review the card.
Ironically, while Puget Sound was working to identify a community reviewer, the Komen Greater Kansas City Affiliate Communications Manager Michael Levine reached out to the Komen HQ team with regards to a similar request – to have the Breast Self-Awareness Messages card translated into Tigrinya.
This educational material would be utilized by news anchor, Cynthia Newsome, who worked with Komen Greater Kansas City’s longtime media partner KHSB-TV. Cynthia was preparing to embark on a mission trip to Ethiopia, and hoped to bring the Breast Self-Awareness Messages card along with her for distribution.
This request came through at the ideal time, as Komen Greater Kansas City was also able to provide the much-needed community review of the card from a local physician who was able to read and write Tigrinya which helped to expedite the translation process.
Once this community review process was complete, 1,000 cards were printed, cut and packaged by Komen Greater Kansas City and sent directly to Cynthia for distribution during her mission trip. Cynthia’s trip proved to be a pivotal turning point for this initiative, as she spoke about breast self-awareness to two specific camps with refugees totaling more than 15,000 people and created quite the buzz locally.
For Cynthia, this journey was a passion project stemming from her own experience and battle with breast cancer. As a three-year breast cancer survivor, she has great passion and commitment to sharing her story and empowering other women. Both her and her husband Ed traveled together to northern Ethiopia, with the goal of empowering women to know their risk, get screened, know what is normal for them and make healthy lifestyle choices.
For them, the message was simple – early detection and effective treatment saves lives. But for many refugees and women throughout Ethiopia, getting diagnosed and treated can be a challenging, time-consuming process.
Dr. Mathewos Assefa, a Radiation Oncologist at Black Lion Hospital in Addis Ababa – the only state-funded hospital in Ethiopia where cancer care is available to patients who cannot pay for their own said, “Many women who find a lump in their breast do not come in because they don’t feel any pain and mistakenly believe there’s nothing wrong.”
Dr. Assefa further elaborated by saying, “By the time they come in the cancer is already spreading through their body.”
This seemed to be shared concern amongst numerous areas in Africa, with similar issues were being raised during their visit to Kenya. Local medical oncologist Dr. Alice Musibi stated, “Awareness, awareness, awareness. That’s what we need. Women need to first know what the signs and symptoms of breast cancer are and then know where to go for help, and then we also need the financial resources to be able to help treat those women.”
For Cynthia and her husband, these concerns and the staggering statistics are what made their journey to Africa so important. Both are committed to continuing their efforts to help raise awareness, and having this tool to take along with them only served as an added benefit for the countless refugees they came in contact with during their trip.
In the U.S. and around the globe, education is a key component to staying healthy no matter where you live. Having the opportunity to share messages that could potentially save someone’s life is an honor that our Affiliates are always pleased to accept.
With active programs in more than 30 countries, Komen and our global network of Affiliates work to connect people – regardless of native tongue or cultural background – with culturally appropriate and relevant information and resources. We are a unified front against breast cancer, and we will keep working in countries everywhere until we’ve beaten this deadly disease.