October 13 is Metastatic Breast Cancer Awareness Day. The Cult of Perfect Motherhood blogger and Hear My Voice Outreach Volunteer Beth Caldwell writes about an event taking place in Washington D.C. Beth invites you to learn more and join next Tuesday.
For a lot of women with metastatic breast cancer, October is hard. You might be surprised by that – with all that pink, you might think it’d be a time where we feel supported and hopeful that the focus on breast cancer might bring us a cure soon. But for me and many others, all that pink inspires only frustration and anger and despair, and this year, we’re planning to turn those feelings into action.
What many people don’t know about metastatic breast cancer is that there is no cure for it. Everyone who has it will die of or with their disease. Three out of 4 women and men (yes, men get breast cancer, too) diagnosed with metastatic breast cancer will be dead within 5 years, and the average life span from diagnosis is only about 3 years. Those of us diagnosed with metastatic breast cancer endure treatments that can rob us of our energy, our hair, our breasts, our fertility, and cause pain, vomiting, blisters on hands and feet, mouth sores, neuropathy, and a host of other horrible things. In sum, life with metastatic breast cancer is often nasty, brutish and short.
In addition, many people don’t know how little of the research dollars for breast cancer go towards metastatic disease – the kind of breast cancer that kills you. It’s only about 7 percent. That’s right: 93 percent of the research dollars spent on breast cancer go towards early-stage breast cancer–the kind that doesn’t kill you. Which is why we still don’t know how or why some breast cancer metastasizes, or how to stop it from metastasizing, or how to stop metastatic breast cancer from killing people. We’re spending 93% of our precious research dollars asking the wrong questions.
On top of that, those of us with metastatic breast cancer know that awareness is not a cure. When I was diagnosed with breast cancer and had to tell my then-6-year-old son, I started out by asking if he knew what breast cancer is, and he said yes. Even HE was aware of breast cancer. If awareness was the solution, 40,000 Americans wouldn’t be dying every year from metastatic breast cancer. Including me.
So, now that you know all this about metastatic breast cancer, imagine how we feel when we turn on the television or go to a store and see a sea of pink, knowing that the awareness won’t save us and that the vast majority of the money being raised isn’t helping us either. We see that pink ribbon and know that for those of us with metastatic disease, the pink ribbon will someday turn to black. Knowing all this, our anger and frustration and despair doesn’t seem so odd, does it?
But this year, we’re trying to do something about it. We’ve started an organization called MET UP, modeled on ACT UP – the AIDS activist group that helped change the landscape for people living with AIDS. We intend to demand change in the world of breast cancer, and we’re starting by organizing a protest at the U.S. Capitol on October 13. We’ll gather at 11 a.m., and at noon we’ll hold hands and lay down to honor the 110 Americans and 1,430 people worldwide who die every day of metastatic breast cancer. We will also be meeting with aides to members of Congress to demand that Congress direct the National Cancer Institute to begin collecting data on how many people with early-stage breast cancer later develop metastatic disease; fund more cancer research in general;, and ensure more federal research dollars are spent on metastatic disease, so that, like people with AIDS, people with metastatic breast cancer can live with their disease instead of dying from it.
We’d encourage anyone who wants to help save our lives to join us at the Capitol on October 13, to show the world what metastatic breast cancer really looks like. I truly believe that if we join together and make our voices heard, we can change the landscape for people living with metastatic breast cancer, and I hope you’ll join us in this effort! You can find more details about the event in D.C. on the Facebook event listing.