For Those Of Us Living With Metastatic Breast Cancer, Research Is Our Only Hope For Survival

Pam Kohl | Oct 13, 2021 | Research, Stories

I was diagnosed with early-stage breast cancer in 2010. I underwent treatment and was told there was a very small chance my cancer would come back. Yet in late 2017, that very small chance became my reality. I was diagnosed with a recurrence of my breast cancer, which by early 2018 had become metastatic breast cancer (MBC) – or breast cancer that had spread beyond my breast and into lymph nodes near my lung. My breast cancer can’t be cured.

Like every other person living with MBC, I know that every therapy I am on to treat it and prevent progression will eventually fail. I was very fortunate to be on my first line of treatment for four and one-half years, more than double the length of time we expected. But my MBC progressed, and I am now on my second line of therapy. The only thing that is certain is that I will eventually need a third and a fourth treatment, and then I’ll need a therapy that doesn’t even exist yet.

That’s why research is so important. It is what gives all of us living with MBC hope. We know it is research that will prolong our lives.

I’ve lived in Raleigh, N.C. since 1977. Forty minutes from me are Duke Cancer Institute and the University of North Carolina (UNC) Linebarger Cancer Institute – two of the world’s leading institutions with many of the world’s brightest minds researching breast cancer. Groundbreaking, lifesaving research is happening up and down the halls of both cancer centers. But despite being eight miles apart, there was little conversation, little collaboration, little cross-pollination happening between breast cancer researchers at the two institutions.

I kept thinking to myself, “My goodness. Is there a way we could get these brilliant researchers at Duke and UNC to work together on finding the cures for metastatic breast cancer? Could we laser focus our efforts on MBC, which is the breast cancer that kills, and bring the best and brightest together?” I wasn’t naive; I knew this was going to be a challenge, but I also knew now was the time to focus on metastatic breast cancer research. I was told the best way to motivate and inspire the kind of deep collaboration I was envisioning was if there was “money on the table”.

“How much?” I asked. I was told a minimum of $1 million. And so, I moved into the role of director of Komen’s Metastatic Breast Cancer Collaborative Research Initiative and my fundraising efforts began.

Raising $1 million didn’t scare me. Little did I know the COVID-19 pandemic was going to hit six weeks after I started in my new role – but I was undeterred. This role was personal for me and my family and the many, way too many, people I know across the country and the world living with MBC.

By raising $1 million, we’d be able to issue two collaborative research grants worth $500,000 each. To qualify for a grant, two researchers – one from UNC and one from Duke – had to collaborate on a proposal to work together on a study of a treatment or cure for MBC. 

I was hoping that maybe we’d get five proposals because it was going to take several first dates, and second dates and third dates for these researchers from UNC and Duke – many of whom have never worked together before – to meet and come up with some transformational, breakthrough research ideas. The good news is we’ve been overwhelmed by the interest and received more proposals than what I was hoping. After a rigorous peer review, three collaborative grants were funded through this initiative.

One proposal by Zach Hartman Ph.D., of Duke University, and Benjamin Vincent M.D., of the University of North Carolina-Chapel Hill, will seek to stimulate the anti-tumor response using vaccine technologies. By stimulating the immune system, they hope to increase the ability to eliminate metastatic tumor growth. The goal of the project is to develop a tumor vaccine strategy for patients with advanced triple negative breast cancer.

The two other proposals are focused on disparities in breast cancer in the Black population.

Jennifer Freedman Ph.D., and Steven Paterno Ph.D., of Duke University, and Katie Hoadley Ph.D., from the University of North Carolina-Chapel Hill, are collaborating to investigate how the ancestry of different populations impacts the immune response to metastatic breast cancer. The study leaders identified biological differences in RNA splicing in tumors between those with African versus European ancestry. Their research seeks to determine if these differences in molecular mechanisms will cause breast cancer cells to grow and spread more quickly in patients of African descent. Due to significant disparities in breast cancer outcomes for Black women, an improved understanding of underlying molecular mechanisms is essential for better treatments and outcomes.

The final proposal by Melissa Troester, Ph.D., MPH, from the University of North Carolina-Chapel Hill and Terry Hyslop, Ph.D., from Duke University will seek to leverage high quality, individual-level tumor biology and social determinants of health data in the Carolina Breast Cancer Study (CBCS) together with community-level variables to understand disparities. Researchers will evaluate how stress contributes to higher metastasis rates and worse breast cancer outcomes in Black women when compared to white women. This work will support efforts to build evidence-based interventions that take into account multiple factors from basic biology to societal impacts to improve outcomes for Black women.

Without the support of more than 600 generous individual donors and corporate sponsors that have invested in this one-of-a-kind, powerful initiative we couldn’t have funded these collaborative proposals. We reached the initial million-dollar raised milestone on Jan. 15, 2020 and have since increased it to more than $1,500,000! This means not only can we fund the initial three proposals, but we have a start on being able to fund even more collaborative projects.                    

Living in the Research Triangle Park of North Carolina, we all know there is a fierce rivalry on the basketball court between UNC and Duke. We also know that bringing these teams TOGETHER to find the treatments and cures for MBC is the shot we all need to help save lives.

MBC is fierce and persistent. For me and my family, this collaborative approach to research among Duke, UNC, and Komen is the urgent hope we need.    

Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.