Guest Post by Corrie Painter, Ph.D

We are at a point in history where the promise of transformative discovery is so real, that scientists are driven like never before. The tools and methods that we are developing have greatly increased our ability to answer questions that were once considered so challenging that they were never even asked. But there’s one critical component that’s missing from our collective research efforts. The patient.

My colleague, Nikhil Wagle, MD, a medical oncologist at Dana Farber Cancer Institute and genomics researcher at the Broad Institute of MIT and Harvard is well aware of the need to empower patients in order to drive the discoveries that will lead to better therapeutic options for people with metastatic breast cancer. Since joining his team at the Broad six months ago, I have looked to every patient, scientist, oncologist and advocate in order to guide me as I navigate the landscape of research and advocacy in order to help launch a genomics research project that is squarely focused on metastatic breast cancer. What I’ve learned is the incredible power behind patient-research partnerships, and how that can lead to amazing advances, and just how much we can accomplish if we take each step hand in hand with the entire metastatic breast cancer community.

For anyone unfamiliar with metastatic breast cancer, I’d like to outline some facts. Metastatic breast cancer, also known as advanced breast cancer or stage IV breast cancer is a cancer that originates in the breast, but has spread to other parts of the body. Common sites of metastasis are lung, liver, bones and brain. There is estimated to be 150,000-200,000 women and men in the United States alone living with metastatic breast cancer. This number really is an estimate – with no national registry that addresses metastatic disease, we don’t truly know how many people are living with this disease. Approximately 40,000 people die each year in the US from metastatic disease. If you break that down, it averages 108 deaths every single day. There is currently no cure for metastatic breast cancer. I hate typing those words. But until we develop a much deeper understanding of this disease, we will not be able to rewrite them.

I myself had no real appreciation for metastatic breast cancer until a few short months ago, but in an ironic twist of fate, I had already known what it was like to be on the fringes of the larger breast cancer movement. My personal experiences with an exceedingly rare breast malignancy called angiosarcoma allowed me to peer through a window that included a lumpectomy, a mastectomy and chemotherapy, with none of the research or support that is poured into breast cancer awareness. As a result, I feel a tremendous amount of solidarity with the women and men who are clamoring for some of the focus to be shifted to research toward understanding their disease. So it is with this perspective that I feel fortunate beyond all measure to play a role in bringing that research spotlight directly to metastatic breast cancer.

Our research efforts may seem a little non-traditional for a group of academic scientists. The typical path from concept of idea to initiation of biomedical research typically doesn’t involve hiring a “professional patient” to help launch a high quality genomics based research project. But that’s exactly what the Broad Institute did. The Broad Institute of MIT and Harvard is a nonprofit academic research institution whose mission is to dramatically accelerate the understanding and treatment of disease, and they put out a call for someone who had postdoctoral experience in cancer research, but who also had experience as a patient and a patient advocate. A patient? From the beginning? For a genomics project? I had to read the job description a few times to fully appreciate this opportunity. Needless to say, I jumped out of my seat in the lab and landed on the phone, and in emails, and at conferences, and in front of the computer writing this blog at the Broad Institute, in order to use all of my experiences to help pull out the chairs for patients to have a formal seat at the table.

So this summer we will launch the Metastatic Breast Cancer Project (#MBCproject), where we will reach out directly to patients across the country and ask them share a portion of their stored tumor samples, their medical records and their voice. From day one, we have worked with dozens of metastatic patients for their help in all aspects of the design of the research study. The patients and advocacy groups that we have been working with have taken turns at the helm as we gear up to launch this project. With their help, we have designed an online consent so that we can work with thousands of people with metastatic breast cancer regardless of where they live in order to empower ALL patients in this community to become part of the process of discovery.

Our plan is to launch a variety of studies focused on different aspects of metastatic breast cancer and to generate an comprehensive set of data that will be stripped of personal information and shared with the entire research community so that all scientists can take part in the discoveries made possible by direct patient engagement. Some of the initial studies that we are launching will be:

–  patients with extraordinary responses to therapies
–  patients who have metastatic disease from their first diagnosis (de novo metastatic disease)
–  young people with metastatic disease
–  patients of racial and ethnic groups that have been underrepresented in genomic studies to date

We’re particularly excited to study patients with extraordinary responses to therapies, the so-called exceptional responders, because the lessons we learn from these patients can yield tremendous insights. For example, Dr. Wagle and other oncologists have learned how to better match patients to certain drugs, how to repurpose drugs that were otherwise considered “failures”, and how to design new strategies for targeting cancer, as discussed in this recent Washington Post article. New clinical trials have already started based on the discoveries from these patients with exceptional responses. The key here is that patients who have had extraordinary responses are very difficult to find at any one medical center, but by casting a wide net across the US, we might be able to identify enough patients who are willing to partner with us in this research to make very meaningful discoveries.

Our research will be carried out at the Broad Institute in collaboration with Dana-Farber Cancer Institute. In addition, we are conducting this initiative in direct partnership with patients, and with a number of advocacy organizations that focus on metastatic breast cancer such as the Metastatic Breast Cancer Alliance, the Metastatic Breast Cancer Network, the Avon Foundation, Living Beyond Breast Cancer, the Young Survival Coalition, and the Inflammatory Breast Cancer Research Foundation.

Through these partnerships and directly with patients, we hope to build each project for the community, with the community. We have many goals in addition to deleting at least one word from my least favorite sentence; there is no cure for metastatic breast cancer. But in order to do that, it will take time, dedication, and all hands on deck, patients + doctors + researchers + advocates working together.

We would love to hear from anyone interested in this project. Please feel free to reach us at info@MBCproject.org, or on twitter: @corrie_painter and @Nikhilwagle.

6/22/15 Tweet Chat Transcript 

Nikhil Wagle, MD is a breast oncologist at Dana-Farber Cancer Institute in the Susan F. Smith Center for Women’s Cancers, and a genomics researcher at the Harvard Medical School and the Broad Institute of MIT and Harvard. Dr. Wagle’s research focuses on metastatic breast cancer genomics and precision cancer medicine. The major goal of his work is to understand what leads to response and resistance to therapies in patients with metastatic breast cancer. Dr. Wagle uses genomic and molecular approaches to characterize patient tumor samples in order to better understand the molecular roots of cancer, characterize mechanisms of resistance to therapies, and identify novel characteristics of tumors that might aid with clinical decision-making.

Corrie Painter, Ph.D is the Associate Director of Operations and Scientific Outreach at the Broad Institute of MIT and Harvard.  A trained cancer researcher with a Ph.D in biochemistry, Painter partners with advocacy groups in the cancer community to directly engage cancer patients for Broad related research initiatives. Painter, an angiosarcoma survivor, is also a passionate leading patient advocate who co-founded and serves as the Vice President of Angiosarcoma Awareness, an organization that supports research into rare cancers.