Why I Don’t Call Myself a Survivor With Metastatic Breast Cancer

Marissa is a “GenXer” living as a “flattie” with metastatic breast cancer since March 2014. Read more of Marissa's blogs here!

I can still clearly remember people’s reactions after I finished chemo for the first time in 2014, a few months after my metastatic breast cancer diagnosis. “You’re all good now; right?” they’d say, their smiles bright with hope. I would hesitate, the weight of my future living with an incurable cancer pressing against my chest. With a heavy heart, I would have to explain that I’d never be “all good.” Although I’d finished that round of chemotherapy, I’d remain in active treatment for life, just not infusions for now. As pity and sadness washed over their faces, I felt I’d let them down by not beating cancer. As a coping mechanism, I overcompensated, turning on my happy attitude to prove I was okay, even when I wasn’t.

This is why the label “survivor” doesn’t resonate with me. Survivorship looks different for everyone. To me, “survivor” implies you’ve overcome cancer and finished treatment. I’ll likely never hear the words “You’re cured,” and my treatment will only end when I run out of options and my life ends. “Surviving” is my go-to word for living day to day with Stage IV cancer.

The gap between my reality and society’s perception becomes more pronounced during October’s Breast Cancer Awareness Month when metastatic breast cancer is given only one day out of the month (October 13). The focus of awareness campaigns touting early detection saves lives completely disregards metastatic breast cancer patients. All of the walks and events celebrating the survivors, or those who have “beaten” cancer, leave me feeling invisible, frustrated, and angry.

A few years ago, I participated in one of these walks for the first time and was chatting with a fellow walker. When I mentioned I was living with metastatic breast cancer, she admitted she only knew of it from the pharmaceutical commercials she had seen on television, which are usually an unrealistic actor portrayal of patients living normal lives. This diagnosis is life changing. Nothing is ever the same or normal again.

Metastatic breast cancer is widely misunderstood. I didn’t fully understand it myself at diagnosis. Now, eleven years later, I know more than I ever wanted to. We are treatable, but not curable. Our treatments are finite and don’t always work or hold the cancer back for as long as we would hope. It is difficult to feel like a survivor when the odds are stacked against you. What many don’t realize is that metastatic breast cancer can affect anyone at any time, even years after successful treatment. 30% of early-stage breast cancer will come back as Stage IV.

Through it all, I have been called brave, strong, and resilient. I’m told I look healthy. But inside, I’m exhausted. I’m sad, depressed, and scared. I don’t feel like a survivor of a disease that kills over 40,000 annually with a median survival of three years. Unless you’ve faced advanced cancer, it’s hard to grasp the trauma and fear it brings daily.

I’m doing what I must in order to survive, and it doesn't feel brave or strong. I still turn on my happy attitude when I need to, learning to adapt as I continue to move forward with the fear of progression never far from my mind. I may not be a survivor by definition, but I’m surviving, and that’s enough. I am where I’m meant to be. I’m surviving metastatic breast cancer alongside an estimated 170,000 others in the United States, holding on to hope for a future where everyone will be a survivor.

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