Oct. 13 is Metastatic Breast Cancer Awareness Day. Chances are good you’re not aware of this disease much, if at all. You might think you are; everyone has heard about breast cancer, right? But metastatic breast cancer, also called Stage 4 breast cancer, is different. I should know, because I live with it.
About 30 percent of women treated for early stage breast cancer, including those treated successfully, will eventually have their cancer come back and spread to a different part of their body. That’s what happened to me. The cancer I thought was “cured” in 2004 came back in two bones in my back in 2014. Although surgery eliminated the tumor, I will never be cancer free. I take an oral chemotherapy medication to keep the disease in check. I will always be in cancer treatment and I live with the knowledge that Stage 4 breast cancer will most likely take my life, long before I reach my natural life expectancy. I am not alone; there are about 250,000 others in my situation, most of us young women.
As long as medication keeps the cancer controlled, we can lead pretty normal lives. We raise families, we work, we travel, and yes, we have all our hair. To pass us on the street, you wouldn’t know us from anyone else. Like everyone else, we want fulfilling, active lives, so access to life-extending medications is paramount. For the medications we take today, we need public and private health insurance plans to make them readily available. Almost all of us rely on insurance to help cover treatment costs, treatment is expensive, and treatment never ends.
Unfortunately, medication effectiveness does end. Today’s treatments eventually stop working in individual patients, as cancer finds a way around the drugs’ blocking mechanisms. So research into new drugs is also critically important to the metastatic breast cancer community. Of the many millions of dollars raised and spent on breast cancer research, less than ten percent goes to research on treating Stage 4 cancer. Certainly all cancer research is important. We are simply asking for more recognition that drug development is the only thing that will give us more time with our loved ones, more time to follow our dreams, more time to be productive citizens.
How do we get better access to currently available medications and expanded research into new ones? That’s where Metastatic Breast Cancer Awareness Day comes in. It’s on Oct. 13 for a reason; every 13 minutes in the United States, a patient dies of metastatic breast cancer. Yet most people are unaware there’s a distinction between early stage breast cancer, which is curable, and Stage 4 breast cancer, which is not. Most people are also unaware that once breast cancer has spread to the bones, as in my case, or to the lungs, liver or brain, it can often be managed as a chronic disease with the right medications.
I volunteer with an organization focused on young women who are diagnosed with breast cancer, the Young Survival Coalition (YSC). YSC is dedicated to critical issues unique to young women facing this disease. More information about YSC can be found on their website at www.youngsurvival.org.
In communities throughout Ohio and the U.S., there are cancer support organizations and professionals dedicated to helping guide and support those faced with a cancer diagnosis. On Oct. 13, we ask that they — and you — take a moment to think about those whose metastatic breast cancer is a constant presence and the policy changes that will best support us.
The writer is a metastatic breast cancer patient and statewide leader for the Ohio Division of the Young Survival Coalition.