I Hear Your Voice

I’ve listened to the voices of people with metastatic breast cancer every day for the past year and a half, and my mind and heart have been opened in ways I couldn’t possibly have imagined.  I had so many misconceptions about metastatic breast cancer before working on the MBCproject. I’m sure I still do, but each time I get to learn along with the MBC community, I jump at the opportunity. I didn’t even know what I didn’t know, and it never occurred to me to ask questions in order to educate myself on what people with metastatic breast cancer face.

I had my own personal cancer experiences, and although mine included a lumpectomy, a mastectomy, chemo and scans every three months, it was not metastatic breast cancer. I also had professional cancer experiences, which included researching melanoma immunology. I could probably recite the entire genetic code of  BRAF, a genetic driver for that particular cancer.  But the landscape from both sides of the bedside and bench look very different for each cancer. So when I started to talk to patients in the MBC community, it became clear that there were several important themes that emerged. Before I try and distill what they are, I have to say that there is really no way for me to capture the depth of my many conversations with MBC patients, and so my attempts here are sure to be an incomplete but sincere attempt to distill what I’ve heard as an outsider trying desperately to help those living within the metastatic breast cancer community.

The patients that I’ve talked to want to be counted. This is a figurative and literal statement.  They want their lives to count, they want their experiences to count, but they also want their numbers to be accurately represented so that researchers can have a better sense for how many people have metastatic breast cancer.  Many patients have conveyed that they want more research focused on metastatic breast cancer, they want people to know and understand what metastatic means, they want new therapies that can extend their lives, they want to live. They want more educational material in order to help others understand what they’re going through. I’ve talked with people of color who have conveyed that they want to be included in all aspects of research and advocacy. All of the patients that I’ve talked with want hope.  Whether it’s for themselves, or someone they love, it’s a universal theme. They don’t want their children to watch them die, they don’t want their children, mothers, sisters, aunts, husbands, fathers and sons to develop this disease. And then there are those who were robbed of the ability of having children. I could never convey the pain that anyone facing this disease feels, but the pain itself becomes palpable when I talk to young women who can’t have children because of metastatic breast cancer.

Most of the patients that I talk with feel that research is the only path forward for people living with this disease, and many have said that whether their efforts to help drive it forward happens within or outside of their lifetime, they are compelled to help others. We all want answers to come within their lifetime. So very badly. But we also know the sobering reality that research takes time, and even greatly accelerating the pace at which we can deliver information about this disease won’t stop it in it’s tracks today.

I’ve listened to the voices of staunch advocates that helped us shape this project, who have now passed away. I hold their medical records in my hands and look at the details of their clinical lives which exist in stark juxtaposition with the very intact sounds of their voices that remain with me, that will remain part of our combined efforts to drive forward our understanding of this disease. We can’t find answers soon enough, we know this as scientists and it drives us every day.

I’ve spent the past year and a half being educated by many hundreds of people living with metastatic breast cancer. I hear your voice. I’ll do everything in my power to ensure that it counts.

I wrote this in support of LBBC's campaign #Stage4Lifer, you can find stories of women and men living with metastatic breast cancer here: http://lbbc.org/stage4lifer 

Corrie Painter, PhD
Associate Director of the Metastatic Breast Cancer Project
6 Years NED from Breast Angiosarcoma