There probably isn’t one specific moment about working at Breastcancer.org that stands out above and beyond all others. It’s more the day-to-day experience of planning and improving our web content — always looking at what else our audience needs from us — and recruiting great experts who can answer those very specific treatment questions.
When I was diagnosed with breast cancer in 1998, I was well aware of what I could not access at that time. Breastcancer.org wouldn’t come into existence for another 2 years. Patient websites and message boards were still a relatively new concept. I painstakingly searched the web for answers and didn’t find many. Finally, I did land on one fledgling website that offered a small breast cancer message board. I logged on nearly every day to ask questions and to look for people whose situations were similar to mine. This wasn’t easy. I was 30, living in a major metro area, and immersed in the 20- and 30-something music and arts scene. People my age had trouble relating to what I was going through, and the idea of finding someone else in my situation felt impossible.
Then, an unlikely miracle occurred. Scrolling through the message board, I stumbled upon another 30-year-old with breast cancer. Her name was Sue and she lived several hundred miles away. I sent her a message and she responded immediately. Sue was studying to become an astrophysicist. She loved hiking and camping, and she was hilarious. It turned out that we had the same diagnosis. We emailed regularly as we tried to mentally prepare for our surgeries. It was strengthening to have her only a mouse-click away as we sorted out our treatment options, got nervous, and became optimistic again. When treatment was over, our communication eventually faded and we returned to our respective present moments, but having her there at crunch time had made a huge difference.
I was lucky to have found Sue at a time when online support was sparse. It’s this experience that really drives what I do at Breastcancer.org. I know how critical it is to get answers to questions that, often, only another patient is going to understand. I know how important it is to read medical information that speaks directly to one’s experience in a voice that feels real. I keep this front of mind when we plan new content and conferences. Today, there are tens of thousands of people reading Breastcancer.org’s pages and communicating on the discussion boards every minute. And one thing is clear — this place is very, very alive.