Metastatic in the Month of Pink

October is dedicated to breast cancer (and liver cancer) awareness, but as a friend of mine says, “I’m here all year!” I’m thinking about and living with metastatic breast cancer 12 months out of the year, not just one. I wonder what it is and how I can contribute to help my friends who are dying, as well as the estimated 155,000 people like me living in the United States.

When you’re living year-round and, if you’re lucky, year after year with metastatic breast cancer, it is all too easy to be forgotten, ignored and left without a voice. This is especially true during October, when feel-good stories about breast cancer often neglect to tell the facts about this disease.

But we are here all year. We are here trying to move the needle away from the scant 7% of breast cancer research dollars, according to Metastatic Breast Cancer Network, to a more equitable percentage that makes sense given the percentage of women diagnosed with de novo metastatic disease added to the roughly 20% to 30% of patients with early-stage breast cancer who go on to develop metastases.

It’s a difficult task when even uttering the word “metastatic” can feel like enough to scatter a group of people who were diagnosed at earlier stages of cancer. I imagine this to be similar to the word “breast” in earlier times.

Today, metastatic is a word that should be said out loud. It’s not to scare people, but to help everyone understand the disease that often can seem pink and feminine, but is deadly for over 40,000 men and women every year.

It’s not unreasonable that we would raise our voices and interject at every opportunity that pink is not a cure and ribbons don’t result in longer lives. Like many of my stage 4 friends, I never knew someone with metastatic breast cancer until I was diagnosed with it. Now I know we live in the cracks and crevices of a world built around happier pink stories.

Metastatic breast cancer is like the bad sister who just won’t behave, is whispered about in the dark and questioned in hushed tones that ponder what someone did wrong to find themselves diagnosed with stage 4 cancer.

At times, it’s hard to live every day with metastatic breast cancer, but it is always more difficult during the month of October. It shouldn’t be. If the purpose of the pink ribbon is to find a cure for breast cancer, then the people dying from it need to be, and should be, front and center in all things. We are the people that all the effort and money is meant to save.

It can be difficult to accept that the time for awareness is over. It’s time for action. We need research and change. It can be scary to know the facts about breast cancer, but facts let all of us — metastatic and early-stage patients, doctors, nurses and researchers — know exactly what we are up against. We are stronger together.