Susan Jacobson: Why “Die-In” to Raise Awareness for MBC Research

My story starts like so many other stories. In March 2015 I found a lump. Three months later, I started treatment for breast cancer. In the flurry of medical appointments between that morning in March and beginning treatment in June, I had a mammogram, an ultrasound, a breast MRI, a PET-CT, a surgery to have a port installed, endless vials of blood drawn and meetings with surgeons and oncologists.

I knew nothing about breast cancer back then. It did not run in my family. So when my oncologist informed me that I had stage IV breast cancer, I had no idea what that meant. I knew from the tone of his voice that it was bad. I immediately Googled “stage IV breast cancer” and found information on the Komen site that said I had a 22 percent chance of living 5 years.

Twenty-two percent.

Soon after I was diagnosed, I turned to social media to find other women who were living with diagnoses similar to mine. What I learned from these women—how to deal with side effects, what drugs were available, what to expect in treatment, complementary treatments, hospital protocol—was as valuable as what I could learn from any single oncologist.

I urge anyone with a serious diagnosis to go online to find reputable social media sites for patients who have a similar diagnosis. Reading lived stories from others in the same situation is both more informative and more comforting than poring over the 466,000,000 hits that a search for “breast cancer” returns on Google.

For online communities, I found breastcancer.org and inspire.com good places to start. You can read content in these discussion areas without logging in. You must create an account to comment, but you don’t have to use your real name. Through these sites I learned about some private groups on Facebook, where I now spend most of my time with my tribe of metastatic breast cancer patients.

I had my first PET-CT after treatment in October 2015. The result was NED—no evidence of disease. That means that blood and imaging tests showed no evidence of cancer in my body. It does not mean that I am “cured,” it just means that the cancer is in hibernation. Waiting to return.

Three and a half years later, in 2019, I am still NED. Every 3 weeks I spend a day in the hospital to check in with my oncologist and get pumped full of cancer drugs, but otherwise I live a pretty normal life.

No one stays NED. So far, I am very fortunate. There are so many women. So many women.  Women I met on social media who shared their hopes, fears and dreams with me. Women who were not so lucky. Their treatments stopped working soon after diagnosis, or after many years in treatment.

They were there, on Facebook, on Inspire, some on chat or messenger, some who lived not far from me, and then they were gone: Beth, Jenny, Mandi, Anna, Lisa, Megan, Andrea, Valynda, Anya, Heather, April, Laurie, Phyllis, Susanne, Doris, Jan, Regina, Sharon, Ty, Jimmie, Mary Anne, Sarita, Laura, my LBBC Hear My Voice colleagues Susie and Jenn. Too many names to write.

No one stays NED. When you’re NED for a while, it’s easy to get lulled into a false sense of security and forget that you are living with stage IV breast cancer, aka incurable, aka terminal breast cancer. Eventually the cancer drugs stop working.

Those who were NED find their cancer has returned. Worried patients and their families huddle with their oncologists to plan the next line of treatment. They discuss different drugs that can keep the cancer at bay for a few more months. They look into clinical trials to see if there is a magic bullet that might buy more time or, fingers crossed, provide a miraculous, long-lasting remission.

One day, more likely sooner rather than later, this will be me.

Metastatic breast cancer is the only breast cancer that kills. And more than 40,000 Americans die of it every year— 116 people per day. Yet, with hundreds of millions of dollars spent to raise “awareness” of breast cancer, most people are unaware that women still die from this disease.

Research is the only antidote to this situation. Public education, through organizations like Living Beyond Breast Cancer, provides the catalyst for public recognition that drives commitment to cancer research.

Beth Caldwell, a leading light in patient advocacy, described the community that organizes around metastatic breast cancer: “I sometimes talk about getting diagnosed with metastatic cancer as being like falling off a cliff and landing in a new land, and you lay there in pain for a bit, and then you get up and look around and say, as Wesley did in the fire swamp in “The Princess Bride”: ‘I mean I wouldn’t want to build a summer home here, but the trees are actually quite lovely.’”

Trees are sometimes used to represent the metastatic breast cancer community. If you see a tree emoji on MBC social media, it may be a reference to Beth’s words. She started her career of patient advocacy at Living Beyond Breast Cancer in 2015. Her life was cut short by the disease that she championed against and sought better treatments and a cure for so fiercely.

Attendees of LBBC’s 2019 Conference on Metastatic Breast Cancer in April can attend the die-in Beth founded with Jennie Grimes. Die-ins illustrate the need for research funding for metastatic breast cancer by showing, live, how many women die of the disease. The first die-in, in 2015, had 108 women laying on their backs in the halls of the conference center to represent the (then) 108 women who died of metastatic breast cancer each day. This year, 113 women will participate.

Susan Jacobson, PhD, is a professor of journalism at Florida National University and an LBBC Hear My Voice alumnae. She focuses her research on fake and misleading health news. Read more about Dr. Jacobson here.