”I’m convinced that eradicating breast cancer won’t happen until we understand a lot more about breast cancer metastasis, the spread of cancer to other parts of the body. People die from the metastases, not the primary tumors, and understanding how and why it happens, and how to prevent it, should be a research priority.”
“Despite widespread awareness campaigns and massive fundraising efforts over the years, breast cancer is still the second leading cause of cancer death among women. There have been small steps forward in combating the disease but we need much, much more.”
These are words I wrote back in 2009, when I launched this blog. Today is my last day working at the National Breast Cancer Coalition, and I will be retiring my advocacy hat, at least for awhile. I felt compelled to look back at my early thoughts on breast cancer and advocacy. I’ve had many experiences and learned so much over the last four years. I expected to cringe at my early words, that they might seem naive. And yet, these thoughts still ring true. In the end, what I learned was that the goals of my advocacy as a recent breast cancer patient, were not misguided or naive, but that money, politics, and influence are difficult drivers to navigate.
I was right about the breast cancer industry, that powerful influences were distracting us or preventing us from making progress. I just had the opportunity to experience some of that industry up close, and to understand the forces we are up against. I learned that breast cancer advocacy is as often about a strategy to navigate around influence and ego as it is about the development of a research strategy. It is a combat sport, leaving bumps and bruises, and even a few scars. I’m sure it is the same with any efforts to bring about major change.
But the need for change remains the same, four years later. We do need to do much, much more. We shouldn’t settle for small, barely noticeable improvement in breast cancer mortality, but hold out for significant progress against this disease. And we need to understand metastasis to do so. I was reminded of dear Maria as she commented on those early words on my blog, responding to my thoughts on metastasis with some information on research she had read about. “It’ll be fascinating research to follow,” she wrote. Maria died from breast cancer metastasis this year and it was a tremendous loss for so many of us, as I wrote about in May. But she was only one out of 40,000 to die from the disease this year, every one of those women with a circle of family and friends experiencing a terrible loss. I still believe that with all of the attention and resources focused on breast cancer, there must be a way to change this for the future, for our daughters.
I’m encouraged to see some change in focus since 2009. There is more discussion about metastasis, a recognition of the importance. Groups are coming together to focus on the needs of women dealing with metastatic disease and on the need to understand and prevent metastasis to achieve real progress against the disease. I suspect there will be collaborations across cancer groups as we learn more about the biology of cancer, that there will be a recognition that the similarities across sites probably outweigh the differences. I’m hopeful that this change in focus, and the new energy and collaborations involving advocates will not just create another arm to the industry, but will result in real change in the future.
As for me, I am returning to medical journalism. I am going back to the International Medical News Group, a place I worked during my twenties as a medical reporter. I will be a managing editor for oncology. I’m looking forward to working with friends from many years ago and with new colleagues, and learning more about the broader world of oncology. I’m not discounting the possibility that learning more about all types of cancer, new treatments and approaches, will help me in some way as a future advocate, but for now I am taking a break.
I do hope I continue to cross paths with the many wonderful, and passionate, advocates I have met along the way. It is your energy that will bring about change for our daughters. And I want to thank Fran Visco, president of NBCC, who has been doing this for so many years, for taking a chance, and giving me the opportunity to work as a telecommuter to offices in DC. Her fortitude continues to inspire.
May 2014 bring good things to us all. Happy New Year everyone!