BRIDGET SPENCE, BOSTON – Breast Cancer Survivor, Advocate
“I can honestly say: I wouldn’t be alive today if it weren’t for the research of Susan G. Komen for the Cure.”
“I was supported by Komen, I was empowered by Komen, and I was cared for by Komen.”
“I have been on 20 different drugs during my six-year battle with metastatic breast cancer, and every single one has been touched by a Komen for the Cure grant.”
I graduated cum laude from Boston University with a bachelor’s in International Relations in 2005. One week after my graduation from BU, I was diagnosed with stage IV breast cancer. I was only 21 years old and had no family history of the disease. Since my diagnosis in 2005, I have had several recurrences of my cancer and still must attend regular chemotherapy appointments. I’ve lost, and then re-grown, my hair five different times. I have been fighting every day for these past seven years. I feel sometimes like a little girl trying to be a brave big girl on this scary journey.
But I realize I am not alone. When I was first diagnosed, I was fortunate to know good people who introduced me to Breast Friends, a support group funded in part by Susan G. Komen’s Maryland Affiliate. Breast Friends was created for women under 40 – women just like me! I didn’t even know there were other women under 40 with breast cancer! Breast Friends doesn’t just offer support; they also offer education. They were the first to say, “Bridget, you should tell your story. You should go to schools and tell your story. You could save some lives.” So, you see, Komen gave me support and Komen gave me a voice.
Komen’s impact on my journey didn’t stop there. In the past seven years, I have seen 12 different doctors about this cancer, and, while every doctor saw my concerns about having babies and getting married as understandable concerns for someone in her 20s, no doctor actually took those concerns to heart. No doctor, that is, until Dr. Ann Partridge at Dana Farber Cancer Institute. Dr. Partridge never told me to “worry about that later” – she helped me take action to preserve my fertility and offered me a plan that worked around my wedding and honeymoon. She even worked with me to make sure my chemo medication wouldn’t cause hair loss, so I could look my best when I walked down the aisle. In fact, Dr. Ann Partridge’s Young Women’s Program was funded by a three-year $1.35 million Susan G. Komen for the Cure grant.
Since my diagnosis, I’ve tried to dedicate my life to raising awareness about breast health in young women because at the time of my diagnosis I was told by several medical professionals not to worry about the growing lump in my breast.
As treatments improve, more and more women and men are living very full lives while still fighting cancer. I hope I can give other metastatic cancer patients a voice! No other organization has had my back like Komen for the Cure, and now it’s time for me to return the favor. Together, we will move toward a cure. I believe we have already started moving, and I believe we are moving forward.
Guest blog post from Stephanie Birkey Reffey, Ph.D. – Director, Research Evaluation at Susan G. Komen for the Cure
Today is an important day for cancer research – the International Cancer Research Partnership (ICRP) released its inaugural Data Report. This report is the first international analysis of cancer research that is based on individual research projects and programs instead of aggregated or estimated figures. More than 50 cancer research funding organizations, including Susan G. Komen for the Cure, shared data with each other and worked together to create this report, and in so doing, created a powerful collaborative movement among cancer researchers.
The ICRP report represents the culmination of more than a decade of work. Prior to 2000, cancer research funding organizations were unable to compare their research activities with each other because there was no common language. However, in 2000, Komen joined nine other organizations at the inaugural meeting of what would ultimately become the ICRP. The intent of that first meeting was for participating organizations to work together to implement a system for classifying research grants so that they could compare and contrast their investments in cancer research with the goal of identifying what was being funded (and what wasn’t) so that funding organizations could work more efficiently and better fulfill the needs of the cancer research community.
At that first meeting, participating organizations agreed to adopt a classification system that had been developed by the National Cancer Institute and the Department of Defense’s Congressionally Directed Medical Research Programs – the Common Scientific Outline (CSO). The CSO classifies research projects according to their area(s) of focus: (1) biology, (2) etiology (the causes of disease), (3) prevention, (4) early detection, diagnosis, and prognosis, (5) treatment, (6) cancer control and survivorship, and (7) scientific model systems. The CSO also includes a standard cancer site coding scheme to identify which type(s) of cancer are being studied. By breaking down research projects into meaningful categories, the CSO enables any organization that uses it to compare and contrast its research with any other organization using the same system.
The ICRP report shows us that, in the years 2005 through 2008, the annual investment in cancer research by ICRP partners ranged from $4.6 to $4.8 billion per year. We can also see that in 2005, 19% of the total investment in cancer research went towards breast cancer ($905 million). By 2008, that number had increased to 20.6% ($996 million).
The report also shows the overall investment in cancer research by CSO category, and breaks it down by cancer site as well as individual partner organization. For example, the report shows that research focused on breast cancer during these years was distributed across all the CSO categories, with most breast cancer research addressing the basic biology of breast cancer (23%) and treatments for breast cancer (22%) and the least being directed at prevention strategies (6%) and scientific models (3%). When we look at Komen’s research portfolio, we can see that we also invested mostly in research focused on basic breast cancer biology during the reporting period (30-31%), but we show a statistically significant increase in research focused on the etiology (causes) of breast cancer (from 6.1% to 10.9%) from 2005 to 2008.
As Komen’s Director, Research Evaluation, I am responsible for the classification of Komen’s research portfolio using the CSO and for reporting on our investments in these and other topic areas. Thus, I have had the privilege of representing Komen on the ICRP since 2010 and have been honored to serve in the position of ICRP Chair for 2011 and 2012. As a participating member of this group, I have seen the power of this international collaboration and the intent of the Partners to collaborate with one another, share best practices in research management and administration, form collaborative partnerships, and strategically coordinate their investments in cancer research to maximize the impact of cancer research for all individuals affected by cancer around the world.
Guest blog from Kathi Ridley-Merriweather, Program Assistant, Susan G. Komen for the Cure® Tissue Bank at IU Simon Cancer Center
Thanks to a new $500,000 grant from Komen, the Susan G. Komen for the Cure® Tissue Bank at the Indiana University Simon Cancer Center is expanding its incredible work to Africa, looking for answers to an aggressive cancer that disproportionately strikes women of African descent.
The Komen Tissue Bank (KTB) is the world’s only biobank, collecting healthy, normal breast tissue which is then shared with researchers across the globe. Komen’s new half-million dollar grant sets the stage for the Tissue Bank to conduct a first-of-its-kind tissue collection in Kenya, gathering normal breast tissue (as well as matched serum, plasma and DNA) from 200 Kenyan donors. This tissue also will be available to researchers globally.
This is a very exciting step in our mission to find answers to the toughest questions that remain in breast cancer treatment and especially for triple negative breast cancer – an aggressive form of breast cancer that disproportionately affects women of African descent. There are no targeted treatments for triple negative breast cancer today, meaning women are much more likely to die of this form of the disease.
The Tissue Bank already includes donated tissue from American women of African descent. Gathering tissue samples directly from indigenous African women could be the critical next step in unlocking knowledge about this form of the disease and developing treatment strategies.
To collect these 200 samples, Komen Tissue Bank staff will travel twice to Kenya. The first trip, in early 2013, will allow bank staff to review potential sites for the collection and build relationships with key Kenyan medical leaders, laying the groundwork for the tissue collection to potentially take place in the summer of 2013. Also during this first trip, a handful of donors will be invited to give breast tissue as a pilot collection.
The actual large-scale collection is projected to take place over multiple days in the summer of 2013. Surgeons, lab technicians, and other individuals will be on site to help all donors and ensure the process runs smoothly. A select group of surgeons and skilled volunteers will travel from Indianapolis to Kenya with the KTB, with most paying much or all of their own way. A significant portion of the effort, however, will be undertaken by Kenyans.
The Tissue Bank opened in 2007 with a $1 million Komen grant; Komen’s investment since then has grown to $7 million!
Komen Races across the country closed National Breast Cancer Awareness Month with a bang. From Tupelo to Texas, survivors and supporters gathered in their pink to support their local Affiliates.
Despite bad weather, over 26,000 people gathered at the 4th annual Greater Nashville Race in Brentwood, TN. Over 500 survivors lead a parade of pink through the city to the start line. Representatives from the Tennessee Titans, country music stars, NASCAR drivers and government officials took part in the day’s activities. A few local celebrities set up Sleep In for the Cure teams, raising over $12,000 without even getting out of bed! The Tennessean covers the event.
Teams were the theme at the Iowa Race for the Cure on Saturday, Oct. 27. The Team t-shirt contest raised almost $2,000, and the Affiliate showcased the top 5 fundraising teams with special, prominently placed tents in the Expo area which the teams were able to decorate. Passers-by stopped and thank the teams for the work they did on behalf of Komen! A fun time was had by all on the Capitol grounds.
It may have been cold, but the sun was shining on the over 14,000 participants who gathered in Germantown, TN, for the Memphis-MidSouth Affiliate’s 20th Susan G. Komen Race for the Cure. Rather than one Honorary Chair, Komen Memphis-MidSouth recognized 20 local individuals who represent the face of breast cancer in the Mid-South. Alexis Grace, former American Idol contestant, and The Bouffants entertained the sea of pink along with WREG anchors and FM100′s Ron Olson who was emceeing his 20th Race. The Commercial Appeal shares more highlights from the morning.
The 13th annual NC Foothills Race on Saturday, October 27 was a great success! While all the statistics are not in yet, the Race saw a record number of participants with over 2,800 registered walkers and runners. Thanks to all of the participants, and the incredible teams who registered, the Race has raised over $175,000 so far – another exciting record!
The 16th annual Knoxville Race brought together thousands of Komen supporters and breast cancer survivors. The event, which is estimated to have raised more than $900,000, flooded downtown Knoxville with pink shirts, wigs, tutus and other accessories on the more than 10,000 participants. Survivor Amanda McAmis, who was diagnosed with the disease when she was 29, shares her battle with Knox News, and Jennifer Blevins, who received financial support from Komen Knoxville while she faced the disease, shares her story with WBIR.
Almost 3,000 participants gathered for the Central Georgia Race, including over 350 survivors. Race participants really enjoyed the new venue and course. Held in Byron, GA, for the first time, the Affiliate was excited to see strong support from residents along the course who decorated mail boxes and were cheering the runners on. The weather was perfect, and the Race committee is already looking forward to planning next year’s Race!
Nearly 20,000 braved the cold in Oklahoma City for the 19th annual Oklahoma City Race. The runners, however, were quick to point out that the cold was nothing compared to what breast cancer survivors have been through. There were many men among those who laced up their sneakers that weekend, and local physician Dr. Pant shares with OKC Fox 25 how critical it is for both men and women to be aware of their risk for breast cancer.
Hundreds of survivors and supporters gathered at Nicholls State University in Thibodaux, LA, on Saturday Oct. 27 for the Bayou Region Race. Daily Comet talked with several survivors about the importance of this event.
Kicking off the North Mississippi Race in Tupelo, MS, organizers held the 15th annual survivor luncheon on Thursday, Oct. 25 – two days before the Race. The survivors’ lunch has been a tradition for friends and six-year breast cancer survivors Wanda Sullivan and Cindy Layman, who graduated high school together and work together at Itawamaba Community College-Tupelo. DJournal.com tells their story. The Race that weekend raised more than $43,000, and fundraising is still going on! WTVA shares more about the event.
Austin and San Diego rounded out the year of Races the following weekend on Nov. 4! In Austin, nearly 15,000 people came out in their pink for the Race, raising about $373,000. The Austin American Statesman shares more from the event.
The 16th annual San Diego Race was a great success as well! Over 13,000 people registered to come out to Balboa Park and support local community programs. Executive Director Laura Farmer shared that while it’s been a tough year, the San Diego Affiliate focused on returning to their grass roots. “We energized our base, and all of that hard work culminated in the beautiful Race. It was a tremendous accomplishment on a sunny, November day.” FOX 5 San Diego shares highlights from the event.
We want to thank every participant, volunteer, sponsor and every other individual who made the 2012 Race series possible. Your incredible support makes a huge impact in your local community, and we can’t wait to come back and Race with you again next year! Until then, be sure to visit komen.org and keep reading our blog to stay caught up on our work and the many ways you can continue to support the fight against breast cancer.
Guest blog post from Susan Brown, Managing Director, Community Health of Susan G. Komen for the Cure
Last month, we applauded NBC’s “Parenthood” for portraying the difficult realities of a breast cancer diagnosis through one of its main characters, Kristina Braverman, played by Monica Potter. Recently, Kristina found out that she has HER2-positive breast cancer, a more aggressive form of the disease which accounts for about 15 to 20 percent of all breast cancer diagnoses. HER2/neu, also called ErbB2, is a protein that appears on the surface of some breast cancer cells and is an important part of the pathway for cell growth and survival.
All breast cancers start in the breast – which makes them alike in some ways – but they are different in others. For instance, they can be invasive or non-invasive, and the tumor cells can vary in location and how they look under a microscope. The type of breast cancer you have often affects your prognosis.
Tumors also have characteristics, such as hormone receptor status and HER2/neu status. By knowing her HER2/neu status, Kristina and her doctors can decide on the right treatment, instead of a “one-treatment-fits-all” approach. Today, HER2/neu-positive breast cancers can benefit from the drug trastuzumab (Herceptin), which directly targets the HER2/neu receptor.
Breast cancer is not an easy journey, for those diagnosed or loved ones who are trying to provide support. We encourage you to check out our resources for helping you understand breast cancer and learn more about different tumor characteristics. Here at Komen, we are continuing to watch “Parenthood” to see how Kristina’s story plays out and would love to hear your thoughts on the storyline as well.