I took on the position of executive director at Susan G. Komen Northeastern New York in July. My grandmother and several friends had beaten breast cancer, I was a volunteer with the organization and I was trained in public health. I was green, but I was confident I could respond to any comment or question that came my way.
One day a woman stopped by my table at a farmers market, told me that she had metastatic breast cancer and thanked me for the work we do. I was speechless. My usual responses to a self-disclosure of breast cancer didn’t fit the bill. “I’m so sorry” seemed inadequate, and asking about her prognosis didn’t feel appropriate either.
Reflecting on the encounter later, I realized how, as a movement, we are taught to celebrate a breast cancer diagnosis because it can be beaten, it proves that you are strong, you wear the special pink shirt, we label you a survivor! However, for those living with metastatic breast cancer, like the woman at the farmer’s market, the experience can be very different.
Metastatic breast cancer is defined as cancer that originated in the breast, but has spread to other organs. The terms stage IV and metastatic breast cancer are often used interchangeably. As many as 30 percent of those who survive breast cancer will receive a metastatic diagnosis, sometimes years after initially beating the disease.
Those living with metastatic breast cancer often feel isolated, alone, misunderstood. And it’s no wonder. A recent study shows that the majority of Americans are unaware of metastatic breast cancer — 61 percent of those surveyed said they know little or nothing about the disease. And sadly, 50 percent of those surveyed believed that a person’s breast cancer returns due to lack of correct treatment or preventative measures.
Unlike other stages of breast cancer, metastatic breast cancer is considered treatable, but there is no cure. For these individuals, there is no “end of treatment” to celebrate. And it’s not uncommon to hear a person with metastatic breast cancer say that she doesn’t identify with the term “survivor.”
We have left these individuals out of the movement and it is our responsibility to step up and do better for the estimated 150,000 to 250,000 Americans living with metastatic breast cancer.
This October, the month traditionally dedicated to breast cancer awareness, more focus will be put on those living with metastatic disease. Once again, Monday has been declared Metastatic Breast Cancer Awareness day across the country.
Here in Albany, we are working to elevate the awareness as well. Later this month, we will participate in a national forum along with our affiliates in Boston and Chicago, focusing on the wide range of concerns facing the metastatic community.
This discussion will feature some of the most prominent names in the metastatic community, including an 11-year metastatic breast cancer patient, the head of the Metastatic Breast Cancer Alliance, and Judy Salerno, CEO of Susan G. Komen. That same day, we’ll also highlight the work being done here in our area and across the state for those battling this disease.
My reaction to the woman at the farmers market is not uncommon; many people have no idea what to say when they learn that someone has been diagnosed with metastatic breast cancer. Living with metastatic breast cancer is something that many in our community have been able to achieve. It’s our job to help ensure that the misconceptions around the disease are eliminated, and those fighting against metastatic breast cancer have the support they need and feel part of the breast cancer community.