While we’ve done a great job of raising awareness about early stage breast cancer, there’s a critical need to move the conversation further to include a population that largely goes unnoticed, and left feeling alone. I’m talking about those living with metastatic breast cancer — cancer that has spread beyond the breast to other organs in the body, and is incurable.
Current estimates show as many as a quarter of a million people in the United States are living with the uncertainty, fear, and sense of isolation that often accompanies metastatic breast cancer. It lives with them everyday as they undergo grueling treatment hoping for another month, another year, knowing their future is uncertain. Every year 40,000 die from it.
In Massachusetts we are building momentum in our efforts to engage and educate women about metastatic breast cancer. Later this month two events highlighting metastatic breast cancer will take place in Boston, as experts come together and present their thoughts and findings on the state of the disease.
These programs demonstrate the willingness and commitment on behalf of breast cancer researchers, organizations, and those who support the cause to communicate and engage the public on this very important topic. But this is only the beginning. We have a lot more to accomplish.
According to a recent survey, it’s clear that societal awareness of metastatic breast cancer shows a lack of understanding, and highlights the need to move beyond the current conversation. In fact, 63 percent of Bay Staters surveyed know little or nothing about metastatic breast cancer, while 70 percent think advanced breast cancer is curable. Additionally, 47 percent think cancer progresses because the patient either didn’t get the right treatments or didn’t take the right preventative measures.
Given all this, it’s no wonder those living with metastatic breast cancer can feel excluded from the larger dialogue and emotionally unsupported. This lack of understanding on the part of the general public excludes these women, and their stories, from the daily dialogue.
Women in Massachusetts and from all across the nation are at risk due to this huge communication gap when it comes to metastatic breast cancer. Helping those living with this dreadful disease feel like part of the conversation is an urgent matter.
Metastatic breast cancer isn’t curable. In fact, the average survival time following a metastatic breast cancer diagnosis is approximately three years, and even lower among certain ethnicities. It remains the second leading cause of cancer deaths among women today.
According to a study published in the journal The Oncologist, roughly one in three — nearly 30 percent — of women diagnosed with early breast cancer will eventually be diagnosed with metastatic breast cancer.
Those of us who know someone diagnosed with breast cancer, even if it’s not advanced, need to heed the call to expand our knowledge of the disease and to understand the profound emotional toll that patients go through. These patients have different needs and different struggles than those diagnosed with early stage breast cancer.
We need to improve conversations between patients and their doctors and encourage them to participate more in the decisions about their treatment plans. Many doctors need to change the way they talk about a diagnosis to their patients. All too often as patients try to process their diagnosis, physicians are speaking at them in medical terms, which they don’t understand. Providing online tools to help patients communicate with their doctor could also help.
Patients living with metastatic breast cancer need to feel empowered. Improving accessibility to resources for the disease should be part of a visit to the doctor.
Simply put, if we are to have an important and lasting impact, we must to do a better job of educating everyone involved — caretakers, physicians, and patients — that because breast cancer is a multidimensional disease, patients have different needs, and their voices need to be included in the conversation.
If we do it right, we can make life better for hundreds of thousands of women and men who live with metastatic breast cancer in our country.
Anne Morris is the chief executive officer of Susan G. Komen Massachusetts.