Community Views: What Metastatic Breast Cancer Feels Like

You feel many things – physically, mentally, and emotionally – with metastatic breast cancer (MBC). From the shock of diagnosis to the reality of daily exhaustion, you have many feelings. Giving voice to your experience is essential. It connects you with others. It also provides insight for those not living with MBC.

To learn more about your experiences, we asked members of our Facebook community to tell us: “How would you describe what metastatic breast cancer feels like?”

Your words convey MBC’s impact on your life. Your life changes forever following diagnosis. As one member poignantly stated, “It took my peace of mind for the rest of my life.”

Here is a look at more of what you shared.

A roller coaster ride

A metaphor shared by several of you is feeling you are riding a rollercoaster. MBC means good and bad moments change at the speed of Space Mountain at Disney World. Scans and tests cause your stomach to drop out like a 100-foot track plunge. Life is full of twists, turns, and drops, and the ride never stops.

“I feel like I’m riding a very scary roller coaster with a bomb ticking away inside of me. I never know how I’ll feel from hour to hour.”

“The world’s longest roller coaster that never ends.”

“It’s a physical and emotional roller coaster that you can never get off!”

Appointments, appointments, appointments

Many feel that life with MBC is measured in the time between appointments. Every few weeks or months, there are treatments, scans, tests, or office visits. MBC dictates everything in your life. You squeeze as much living as possible into the "in-between" times. You never know what the next round of scans will reveal.

“I live my life scan to scan, surgery to surgery, treatment to treatment.”

“It feels like I have to fit everything I want to do in life into little 4-month bursts to wait and see what scans will show.”

“All vacation plans need to be scheduled around my treatment schedule.”

Life full of uncertainty

Stability and predictability vanish with an MBC diagnosis. You are always waiting for the next shoe to drop. Symptoms shift rapidly. One day you can run errands. The next, fatigue keeps you in bed. You wonder when and where the cancer will spread next.

“You never know what the day will bring."

“I could be thriving today and in hell tomorrow. It is very unpredictable.”

“A dark cloud overhead that could come down on top of me at any time.”

Emotionally and physically draining

Life with MBC is exhausting. The physical and emotional toll affects you every day. Your body is tired, achy, and weary. You feel anxious, sad, and fragile. Loved ones try to understand, but only others with MBC fully grasp this journey.

“Painful and exhausting.”

“It feels like a death sentence.”

“It feels like a heavy rock I have to carry around 24/7. I never get to unburden.”

“Anxiety; always hoping for stability and fearing growth.”

We appreciate all the ways you share your MBC journey with us. We hear how you struggle daily since diagnosis. It is a privilege to be part of your support system.