Blog by Komen Quad Cities Board President Laura Ernzen
As the color pink seems to be everywhere throughout the month of October, I’ve often thought about what makes Komen different from the many other breast health organizations asking consumers for support. That difference came into focus for me at a recent event series hosted by the Komen Quad Cities Affiliate.
In the spirit of full disclosure, I’m a long time Komen volunteer and currently serve as Board Chair for Komen Quad Cities in Bettendorf, IA. In my professional life, I’m the Vice President of Marketing for IH Mississippi Valley Credit Union. It’s a unique perspective to be both on the asking and giving sides of sponsorship and donation requests. I’ve had the pleasure of working with non-profits who have a clear mission, illustrate how they use their funds and share the impact they’ve made in my community. Others have walked out my door leaving me wondering—unsure and unclear. So when we crafted plans for our recent Race to Research event, featuring Komen Scholar Dr. Olopade, we wanted to make sure it was focused on Komen’s mission.
Dr. Olopade hit the Moline International Airport running, and we kept her busy with back-to-back events. We were joined by many long-time supporters, third party fundraisers, community health professionals, survivors and volunteers. In about hour and a half, we talked about how we raise money, and how our local grants program puts those dollars to work in the communities we serve. Dr. Olopade, the featured speaker of our luncheon, shared how her efforts, and those of many others, are driving breakthroughs in breast health.
Later, Dr. Olopade led an educational session for area health professionals. Every day our Komen Affiliate strives to fulfill our mission, but these dedicated individuals are on the front line – nurses, technicians, doctors and community health advocates openly sharing and learning from one another. It served as a great reminder that our mission extends beyond education and outreach. Sometimes the most important thing we do is create a community—a community of survivors, advocates, health professionals and volunteers.
We ended the day with a community forum, featuring Dr. Olopade and local experts Dr. Hass and Dr. Mercer. With varied backgrounds and experiences, it was impressive to see these doctors, from different hospitals and states find so much common ground as they answered questions from the audience. It never ceases to amaze me the range of questions asked. Perhaps it speaks to the varied experience of everyone who’s gathered, from “should I get genetic testing”, to pros and cons of various screening methods, the wealth of information shared and the learning that took place once more reminded me how truly important Komen’s work is in the lives of women and men everywhere.
From the luncheon, to the education session, to the community forum; a wide and varied group came together. That drive, that commitment to meet at our mission, is perhaps what makes the Komen difference.
Susan G. Komen is the voice for the more than 3 million breast cancer survivors and those who love them, working to ensure that the fight against breast cancer is a priority among policymakers in Washington, D.C., and every Capitol across the country. Komen has a rich history of more than 30 years in public policy and advocacy. In order to achieve our mission, we believe that scientific progress must be complemented by sound public policy and advocacy. Through government action, broad, systemic, lasting change can be made in the fight against breast cancer. This means that Komen—as a patient advocacy organization with first-hand knowledge of how breast cancer touches local communities—must engage policymakers and government as partners in our efforts to end breast cancer forever.
As the 114th Congress and state legislatures convene this month, Komen is pleased to announce its 2015 Advocacy Priorities. These issues will serve as the focus of our advocacy work in the coming year. They are:
-Support expanded federal funding for breast cancer research at the National Institutes of Health (NIH) and the Department of Defense (DOD);
-Support state and federal funding for the Centers for Disease Control and Prevention’s (CDC) National Breast and Cervical Cancer Early Detection Program (NBCCEDP);
-Advocate for policies to improve insurance coverage, including those that would require oral parity, preclude specialty tiers and prevent step therapy protocols; and
-Evaluate state and federal policies to reduce or eliminate out-of-pocket costs for medically necessary diagnostic mammography.
To advance our policy priorities, Komen works with our staff, volunteers, grantees, researchers and friends in communities across the United States, to ensure breast cancer is a priority among policymakers at the federal, state and local levels and to increase access to affordable, high quality breast health and cancer care services.
Each year, Komen works to identify, through a transparent and broad-based, intensive vetting and selection process, the policy issues that have the greatest potential impact on Komen’s mission. This process includes the collection of feedback from Komen Headquarters leadership, policy staff, and subject matter experts; Komen Affiliates from across the country; advisory groups including the Komen Advocacy Advisory Taskforce (KAAT), Advocates in Science (AIS), and Komen Scholars; and other stakeholders with a vested interest in breast cancer-related issues. The selected issues are the basis for Komen’s state and federal advocacy work in the coming year.
We are excited about the potential of our 2015 Advocacy Priorities and, as always, appreciate the enthusiasm and hard work of our supporters to ensure that breast cancer issues are front and center before policymakers.
Stay tuned to the Komen blog for updates on this important work. Looking forward to a wonderful 2015!
Learn more about Komen Advocacy here.
Those words hung in the air – weightless – creating an emotional limbo into which I floated
Finally I said, “What isn’t fine – now?”
I didn’t want this conversation, I thought, but, as I heard the results of my mammogram, I kept hearing in my heart, “You’ll be fine, really… you will be fine”. It appeared that Dr.Connor had just provided me with the mantra that would take me through my season with breast cancer.
Breast cancer was the iconic phobia of my life, and now I had it. Strangely, the word itself lost its obnoxious power to frighten me, as my husband, Bill Rollnick and I began our private race for a cure. But, to my surprise we were not running alone.
Friends appeared with loving support and information. Among them, Nancy Brinker, (a remarkably caring woman who has dedicated her life to ending breast cancer) who assessed my situation and candidly gave me her best advice:
“Don’t be a brat! Listen to your doctors!”
“Yes Ma’am,” I muttered, in the throes of endorphin-released laughter.
It wasn’t so funny, however when I began my research.
The first topic that caught my eye was, “Breast Cancer Death Without Treatment.” Well, that certainly cuts to the chase! I read it, but the only word I remembered from the article was ‘treatment,’ which brought on a massive, emotional surge of gratitude. I could turn my back on death.
I can be treated. I will be fine. My mantra has taken on a codicil.
Doing cancer research on the Internet can be daunting, but I soon found the Susan G Komen and Mayo Clinic: Diseases and Conditions websites. They became my go-to sites for both their accuracy and relevance.
Bill and I choose M.D. Anderson in Houston, Texas, and I had my team – Incredible doctors headed by Dr. Tom Buchholz.
Diagnosis: Left Breast – Stage 2 Node Negative, Invasive Lobular Carcinoma.
Treatment: Four weeks of radiation followed by adjuvant hormonal treatment (five years of aromatase)
Comfort Food: Goode’s Texas BBQ and Molina’s Cantina.
I was set, and I could not believe just how lucky I was. I really will be fine!
When I first arrived I heard the clanging of a bell. Odd, I thought and asked what it was. “The bell that is rung when someone has finished treatment”, I was told. Wow, I thought. One day Bill and I will ring the bell together. It became our goal – our victory.
That month at M D Anderson changed my life, not only because of the superlative treatment I received, but I found I had become part of a community of women (and men) who care, who love, and who join joyfully together to celebrate life one day at a time.
Bill and I often think back to my time at M. D. Anderson… to the truly brave women – many who had lost their hair and who were facing stage IV diagnosis, to their stories, to their laughter and friendship, and finally to the bell that rang each time a patient finished their treatment, offering us all hope with each triumphant chime.
Is there any wonder why we both are passionate to support cancer research and treatment?
This year, my husband and I are honored to co-chair the Susan G. Komen’s 5th annual Perfect Pink Party, held in Palm Beach, alongside Christina Baker. The event raises much needed funds for cancer research and treatment. We thank them for the incredible work that they do, and for the reality that this happy, fun event will make a difference in the lives of breast cancer patients all over the world.
Click here to learn more about the Perfect Pink Party and Komen’s work in the Palm Beach area.
Scientific Grants Manager Dr. Jamie Stanford shared some recent findings by Komen-funded Scientist Dr. Antoine Karnoub who is currently an Assistant Professor at Beth Israel Deaconess Medical Center and Harvard Medical School.
There are many puzzles that need to be solved to fully understand breast cancer, but one puzzle in particular has scientists buzzing like bees lately. How do normal cells behave around cancer cells? How do cancer cells speak to, even manipulate normal cells, to help them not only survive, but metastasize? And, why do scientists care about ‘normal’ cells when they should be focusing on ‘cancer’ cells?
In a recent publication, Komen-funded Scientist Dr. Antoine Karnoub has pieced together parts of this puzzle. His studies show that a special group of normal cells within the breast tissue environment – called Mesenchymal Stem Cells (MSCs) – are directly recruited by the growing breast cancer cell army. “We think that by direct actions on the cancer cells and by manipulating other cells in the microenvironment, MSCs end up providing cancer cells with better abilities to survive and a safe haven in which to thrive,” said Dr. Karnoub in a recent interview.
- FOXP2 protein levels are lower in breast cancer cells.
- Low FOXP2 levels are found in metastatic breast cancer and associated with poor patient survival.
- HER2 positive breast cancer had the lowest levels of FOXP2 indicating that it may be a factor in predicting future metastasis.
Dr. Karnoub figured out one additional piece in the complex story involving breast cancer cells and MSCs. His team found that breast cancer cells make a particular small piece of RNA in abundance – called microRNA-199a – when they come in contact with MSCs.
MicroRNAs are small pieces of RNA and their overall role is to stop the production of target proteins. It turns out that microRNA-199a inhibits the production of FOXP2, a protein previously linked to speech and language development, but had never been linked to breast cancer.
They asked if reduction of FOXP2 levels had any effect on the behavior of breast cancer cells, and were surprised to find that inhibiting it caused the cancers to metastasize or spread to other parts of the body with more potency. Therefore, reducing microRNA-199a levels, which would result in increased FOXP2 protein, could reduce metastasis. Dr. Karnoub and colleagues are currently conducting these studies using Komen support.
“We are one step closer to understanding how [normal] cells in the tumor microenvironment, such as MSCs, promote the malignancy of neighboring cancer cells”, Dr. Karnoub explained. While metastasis is a scary word, patients can find some peace in knowing that dedicated scientists from all around the globe are working together to understand it so that it can be controlled, prevented, and treated. Piece by piece, the puzzle will be put together.
Dr. Karnoub’s study was published in Cell Stem Cell in October, 2014.
Read more research stories on our Research Accomplishments page.
Guest blog by Karen Durham, Member of Susan G. Komen Advocates In Science (AIS) steering committee
The North Central Region of Susan G. Komen hosted a series of educational webinars during October, Breast Cancer Awareness Month. The October 22 webinar was titled “The Metastatic Cascade” presented by Dr. Danny Welch, PhD, a Komen Scholar and the Director for the National Foundation for Cancer Research Center for Metastasis Research for the University of Kansas Medical Center. Dr. Welch’s research is focused on understanding how tumor cells acquire the ability to spread to other parts of the body, or metastasize.
I have not called Dr. Welch “doctor” in a long time! To me, he has been ‘Danny’ for many years. Danny is very personable, open, and receptive to research advocates. Danny is also one of the few researchers focused on metastasis research – and I am living with metastatic breast cancer (MBC). We have become good friends over the years because of this; such good friends that he can take one look at me and tell if I’m having a bad emotional day. Danny is a dear friend who is trying his best to find the advances and cures to keep me alive!
40,000 women in the U.S. die from breast cancer each year. Over 90 percent of these deaths are associated with metastases. MBC presents some of the most challenging questions in breast cancer research. Answering these questions requires both more funding and more researchers interested in this topic.
One very interesting aspect of the webinar was Dr. Welch’s explanation of the “hallmarks” of metastatic cells which are:
- They must invade a distant part of the body from the original tumor site
- Be able to survive in a distant part of the body
- Be able to establish a new home in the distant site
- Be able to colonize or multiply in the distant site
He explained that a tumor cell must be able to complete all four of these functions or it will not be able to form metastatic tumors.
“We are slowing making progress, but we are not where we want to be. We need to take circulating tumor cell information and look at the genetic changes, and we need to be able to personalize treatment for each patient.” – Dr. Danny Welch
Dr. Welch spoke about genes that are known to cause metastases; interestingly not all 35 of these have an obvious connection to breast cancer. Exploring how these genes influence metastases gives researchers the opportunity to study them from a new perspective.
Dr. Welch’s lab is working to understand metastasis and how to stop it. He is studying metastasis suppressor genes, like the KISS1 gene which prevents tumor cells from colonizing at a distant site in the body. He is also investigating the role of mitochondrial genes in metastasis and how these genes might make some patients more susceptible to metastatic disease. I was excited by the new information presented in the webinar. However, the bottom line is that there is still no cure for metastatic disease. The best we can hope for is that there are enough different drugs to prevent our diseases from spreading further until the cures are found. Depressing - YES – but it is also extremely encouraging any time there is something new on the horizon that may help me, or the estimated 150,000 like me living with MBC, live longer lives.