A Clarion Call: Changing the Reality of Metastatic Breast Cancer

By Judy Salerno, M.D., M.S., President & CEO of Susan G. Komen, and Danny Welch, Ph.D., Komen Scholar and Professor and Chair Adjunct faculty of Department of Molecular & Integrative Physiology at the University of Kansas Medical Center

Today's Metastatic Breast Cancer Awareness Day underscores a disturbing reality in breast cancer. Despite all the progress that has been made over three-and-a-half decades of the breast cancer movement, 40,000 women and men are still dying of breast cancer every year in America, primarily from metastatic disease.

Metastatic breast cancer, also known as stage IV breast cancer, is breast cancer that has spread to other parts of the body - most commonly to the bones, lungs, liver or brain - where it becomes lethal. Too often, metastatic breast cancer (MBC) is found in women and men who were told they had "beaten" breast cancer before - sometimes even a decade or more after they were declared disease-free. Sometimes, women or men go to the doctor with mild complaints only to learn that they are now living with metastatic breast cancer.

It's a cruel hand to be dealt. People with metastatic disease live from checkup to checkup and treatment to treatment, always wondering if or when a treatment will stop working and if other options are available for them to try. Every twinge of pain in the back or head - perhaps dismissed as a minor irritation in healthier times - now brings with it the harbinger of cancer's progression. They fear for children who may grow up without them. They despair of anniversaries or graduations that they may miss, all the while living with the physical, financial and emotional realities of often-difficult treatments that may or may not work.

Some will live with this reality for many, many years. Others, tragically, for only a few months. As physicians and researchers, we've watched patients have agonizing internal conversations about why this happened to them. Did I bring this on myself? Should I have been more disciplined about getting my mammograms? Should I have eaten healthier? Or even more agonizing questions - often initiated by well-meaning friends: Do I need to be more cheerful, have a more positive attitude?

The reality - and this we know for certain - is that metastatic breast cancer is no one's fault. It can strike a person who "did everything right." And while optimism and a positive attitude never hurt anyone, a lack of exuberance is not why people die from breast cancer.

Thirty-five years after the launch of the breast cancer movement, we have learned many things about breast cancer and seen death rates from breast cancer decline by more than one-third in the U.S. Yet - and this is true for virtually every form of cancer - we still don't know how metastatic disease starts, who is most at risk, and how to stop it for good, in everyone.

It's not for lack of effort: hundreds of millions of dollars have been spent and millions more are being spent on metastatic breast cancer research through private organizations like Susan G. Komen, the Breast Cancer Research Foundation, and smaller organizations such as Metavivor.

We are heartened by the potential of new approaches such as Big Data and genomics to advance our understanding in our quest for cures. We experience advances every day such as the discovery of genetic mutations, and new treatment protocols that show promise. We are gaining on metastatic disease, but to be perfectly candid, it will be years before we will be able to claim victory over it.

That is not an admission of defeat. It is a clarion call to dig deeper and more broadly to save the lives we can today and into the future. This means continuing funding of research, yes, and there needs to be a sea change in how new therapies for MBC are developed and tested. It also means facilitating participation in clinical trials for metastatic patients such as BreastCancerTrials.org, a collaboration with Susan G. Komen that offers a custom matching service to find clinical trials that fit a patient's profile, and specifically for metastatic patients.

We are advancing grassroots participation in large-scale research initiations such as the Metastatic Breast Cancer Project (funded in part by Komen) that is collecting saliva and tissue samples and medical records to help identify paths to cures. We also are calling for greater investment in federal cancer research funding, including metastatic research.

In the meantime, we will continue helping women and men who need connection to medical care today, by supporting local community programs that offer funds for insurance co-pays, or patient navigators, or even bus fare to treatment. These on-the-ground programs also give people a fighting chance against their illness.

As we do all these things, we will build on partnerships such as the Metastatic Breast Cancer Alliance and collaborative initiatives like the National Cancer Moonshot, and any venue that can help conquer this last frontier in breast cancer treatment.

Most importantly, we will ensure that the voice of metastatic patients is heard, respected and heeded. Thirty-five years ago, women felt ashamed and stigmatized for even sharing that they had breast cancer. Komen opened in 1982 and changed that conversation, giving women and men a global community that supports them and works to find the cures.

Some in the metastatic community tell us they often feel shut out or lost in a movement that celebrates the more positive outcomes of the vast majority of breast cancer survivors. We can assure you that at Komen, the mission to end breast cancer has always meant finding ways to cure everyone through research, and by supporting them medically, financially and psychologically along the way.

That mission has never changed, and never will. Komen has set a bold new goal to reduce the current number of breast cancer deaths in the U.S. by 50 percent in the next decade through research, and by building programs that ensure access to quality breast cancer care for everyone.

Obviously, we will work to exceed our 10-year goal, but be assured: we will not back down until no one dies of breast cancer, ever again.