When I was first diagnosed with metastatic breast cancer, I did not know there were so many other people like me until I attended Living Beyond Breast Cancer’s Conference on Metastatic Breast Cancer.
Spring isn’t just about birds and daffodils for me, it’s about returning to the people who helped me understand that I truly wasn’t on my own with metastatic breast cancer: Living Beyond Breast Cancer’s (LBBC) Conference on Metastatic Breast Cancer. This year, like the past two years, the conference is virtual, but they’ve mastered the method of getting the crucial information you need to live well with metastatic breast cancer straight from the experts to you along with the friendly connections we all desperately need.
Because breast cancer is so common—in theUnited States, one of every eight women will be diagnosed with it, according to the Centers for Disease Control and Prevention—and support organizations for the disease are so well-known, it can be easy for the rest of the cancer world to forget that people living with stage 4 metastatic disease are a relatively small piece of the breast cancer picture. I was diagnosed from the start with metastatic breast cancer, but because so much of the medical terminology was unfamiliar to me, I didn’t understand for some time that my diagnosis meant that a lot of the information I read online or received through well-meaning people didn’t actually apply to me.
The focus on breast surgery, breast reconstruction and breast radiation, the “new normal,” and even the ever-present theme of being a survivor hit me hard during those early months. I sought out information from medical sites and searched — sometimes obsessively — for hopeful statistics in academic research papers.
The fact that that there was a whole world of other people living with metastatic breast cancer was lost on me. I was so busy trying to figure out how I was going to live, searching for ideas that would let me make the most of whatever time I had, that I missed the most obvious resource: other people like me.
It’s popular to say that “You don’t know what you don’t know,” but no words could be truer of me coming to my first LBBC conference. Not only were there hundreds of people living with metastatic breast cancer, but there were also companies and organizations with resources specifically for someone like me, and information from top oncologists and researchers talking to me about me.
For two days, it is all about metastatic breast cancer — learning more about your subtype and new treatments, hearing from experts about parenting, exercising, living better with this disease, getting details about financial and insurance resources, finding out how to locate a clinical trial or get involved in research and advocacy. It can be a lot for any of us, so there are opportunities for us patients to talk amongst ourselves too.
There’s no question the virtual conference is different from the ones I first attended. For one thing, there will only be virtual hugs, but if you’ve been struggling with metastatic breast cancer, just a single first connection can be enough to help you find a way forward.
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