Why Research is the Reason

Way back in the early 1990s, breast cancer felt like a dirty phrase. People whispered it in secret, afraid to talk about this disease. The concept of “awareness” was only beginning to take hold, a primarily grassroots tool that put into place some structural cohesion for those whose lives had been impacted by breast cancer. I remember the first time I participated in a breast cancer walk – I was in middle school, and had no understanding of this disease, what it meant, or how devastating it would be on so many. More than anything, I had no crystal ball to anticipate how destructive it would be on my own life.

Now, almost 30 years later, aided by the myriad channels of social media, we seem to have arrived at a place of breast cancer awareness – or at least, recognition. Breast cancer exists, and it exists for all of us –  Angelina Jolie’s New York Times Op-Ed discussing her bilateral mastectomy decision and Julia Louis-Dreyfus’s candid discussions about her diagnosis and ongoing treatment illustrate some of the manners in which even celebrities have reckoned with this illness. This begs the question: with this level of breast cancer awareness, why are so many people still dying from this disease? 

In a woman’s lifetime, she carries an approximately 1 in 8 chance of receiving a breast cancer diagnosis. This statistic is affected significantly by a number of additional factors, but one in eight women (that number does not take into account the men who will be diagnosed with breast cancer as well) is a startlingly high probability of diagnosis. Of those one in eight who are diagnosed, one in three will develop metastatic breast cancer – cancer that has spread beyond the breast into one or more additional organs. While challenging, the conventional lines of treatment – chemo, radiation, and surgery, – provide a 5-year survival rate hovering around 90%, and remains around 80-85% for the ten-year survival rate.

Those of us who have metastatic breast cancer have a 5-year survival rate of approximately 27%. Our median survival rate is 3 years.

The idea of the development of “a cure” for breast cancer feels like such a noble rallying cry. Finding a cure would be fantastic. But what does that actually entail? When statistics such as the one above still exist, we are nowhere near a place where we can talk about a cure. I was diagnosed the same week that my little boy turned two. By these statistics, I have little more than a 25% chance of being alive for my son’s 7th birthday. Not only would I miss out on things like high school graduation, college graduations, weddings, and future grandchildren, but I would not be around for my son to do things like read a chapter book, learn to ride a bicycle, celebrate a lost baby tooth, or watch him graduate kindergarten.

Last week, in between an appointment with my oncologist, innumerable phone calls with my mail-order specialty pharmacy, research about my new chemotherapy treatment, and a biopsy of my liver, I realized that it had been 18 months since my breast cancer diagnosis. In that 18 months, my cancer progressed on two different lines of treatment, and from my breast and bone tissue into my liver, lung, and brain. My cancer has developed resistance to a number of treatment modalities available, and, today, Mother’s Day, I will start my first line of chemotherapy treatment. In a very literal sense, it’s a hard pill to swallow.

When talking to people about the extent of my cancer, I am frequently asked why my medical team is not able to cure me – why the metrics I use are “stable disease” and “no progression,” rather than “cure” or “remission.” I use these terms because they are the ones afforded to me. The language for likely elimination of metastatic breast cancer from my body is not appropriate language because the science, the research, has not created that space. Statistically speaking, it is more likely that I will die from this disease before my son finishes first grade than it will be for such research to be made available so as to provide me a treatment that will render me with no evidence of disease.

Now, I am not indicating that scientific advancement has stalled – on the contrary, the avenues for research in metastatic cancers (including breast cancer) are continuing to make impressive and important strides, particularly with the ever-increasing understanding of the genome and its role in immunotherapy. However, despite the billions of dollars made available for breast cancer organizations nationwide, only around 7% of total funding across organizations is allotted to research on metastatic breast cancer. That is 7% of total research dollars dedicated to a disease that kills approximately 116 people each day, and over 40,000 people each year. This number is, quite simply, unacceptable.

So what is there to do? The simple answer is to fund more research. But not just more research, but the right research – metastatic breast cancer affects over 30% of those with a breast cancer diagnosis, and the mechanisms for metastasis, resistance, and progression are tremendously multi-faceted. For example, the development of endocrine resistance in metastatic breast cancer is a common occurrence, and often one that indicates a poorer prognosis, but there are still significant gaps in the body of knowledge surrounding the cancer biology of why this happens, how to recognize it, and how it should be treated. This is the current state of my cancer, and I find it unacceptable that when I ask why it is happening, the answer is still “we don’t know.”

The passion, drive, and innovation in research on cancer biology, metastasis, and mechanisms of drug resistance are truly incredible. And it is imperative that they continue to have access to the necessary funding – not at 7% of total research dollars, but in a manner in which the scientific community can continue forward in relentless pursuit of scientific mechanisms that will increase the available treatment options for those of us living with metastatic breast cancer, prolong our lives, and improve the quality of those lives. The Founder’s Fund of the Breast Cancer Research Foundation is addressing these discrepancies in metastatic research in a multi-dimensional, collaborative, and innovative way. It is paving the way for scientists like Suzanne Fuqua, Fabrice Andre, Priscilla Brastianos, Lewis Chodosh, Daniel Haber, Laura Heiser, Benita Katzenellenbogen, Paul Macklin, Paul Newton, Qing Nie, Robert Schneider, and Valerie Weaver to identify specific pathways of mutation and the development of resistance – research that will, in turn, allow for the development of treatment that will prolong my life.

Today, for Mother’s Day, I ask that you recognize the role of research in rewriting the statistics for metastatic breast cancer. This morning, while I brew my morning coffee, I will take my first dose of chemotherapy. Research is the reason that I have been able to utilize targeted treatments and, until now, avoid chemotherapy for the first 18 months of my diagnosis. Research is the reason that, despite so many terrifying statistics, I still have other treatments available to me at this point. And if I am in the audience on the day that my little boy graduates from Kindergarten, research will be the reason for that as well.

Emily’s Breast Cancer Research Foundation Fundraising Page

 

Sources*
Breast Cancer Research Foundation Breast Cancer Statistics
Metastatic Breast Cancer Alliance Landscape Analysis: Research Report, October 2014
Metastatic Breast Cancer Network: Most Common Statistics Cited for MBC
National Cancer Institute SEER Database for Female Breast Cancer
American Cancer Society Breast Cancer Facts and Figures 2017-2018
Cancer.net Breast Cancer Statistics

*There are a number of challenges in accurately representing metastatic breast cancer statistics, many of which I have not addressed here for the sake of brevity. These resources provide further insights into the various statistical breakdowns necessary to better understand the nuanced and complex landscape of breast cancer, particularly metastatic breast cancer. 

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