Are We at Risk of Losing Our Breast Cancer Community?

Martha Carlson received a diagnosis of metastatic breast cancer in 2015. Read all of Martha's blogs here!

I came late to the cancer community. It wasn’t until a year and a half after my diagnosis with de novo metastatic breast cancer (MBC) that I met my first friend with a similar diagnosis.

She was an outspoken and involved MBC advocate who tracked me down after a local event for any-stage breast cancer.

I’m not lying when I say that meeting her was an eye-opening and momentous event in my life. I hadn’t been aware of the vast network of patient knowledge, nonprofit efforts, funds or even some of the basics of MBC that didn’t specifically apply to me.

There are times when I wonder what I would be doing now if our paths hadn’t crossed. Maybe I wouldn’t be writing for CURE®, maybe cancer would just be a footnote in my life, maybe I would care less about everything happening around me.

We would have been friends regardless of when we met, but right now, in the United States, jumping into a community of people from a variety of backgrounds and with sets of beliefs that differ wildly among us can be a challenge. In the past, I’ve paused my time in various groups for personal reasons, mostly because they brought too much loss and confusion when I already had that among the people I knew in person. But now I find myself questioning many cancer groups because the turmoil in the wider world has affected how we think about each other. I’m guilty of that, too.

For example, until this past week, I had never blocked a person in a closed cancer Facebook group, but in my life outside of cancer, I don’t tolerate people “laughing” at someone else’s pain. So, when I saw such a response to a comment of my own regarding clinical trials, I didn’t hesitate to hit block.

But that choice has stuck with me. I believe that as much as the term is derided in some circles, people living with a terminal disease who are seeking support deserve a “safe space” with rules in place that consistently prohibit hateful comments or bullying and encourage “scroll by” behavior for topics like politics or religion that easily offend. Not an easy job for the fellow patients who monitor these sites where pain, love, knowledge and tips reverberate.

But keeping the chaos in the wider world under control within our groups means everyone, including people at their most frightened, can find hope and support.

It’s been hard to see the cancer communities that brought me close to so many people crumble over the past couple of years, places like Twitter that united researchers and MBC patients, the breast cancer social media hashtag that once made finding friends easy and even closed Facebook groups.

I hope that these connections rebuild themselves because there is much at stake and, with them, our lives are so much richer. I treasure my MBC friends, whether met on or off social media, for so many reasons, including how I’ve grown because of them. Without these cancer communities, my world would have continued to shrink, but because of them it has flowered. I hope that can continue.

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