Twenty-five years ago, I sat in my doctor's office and heard these words: You have breast cancer. That was in 1987, when the world's population reached five billion, a gallon of gas was 89 cents, Ronald Reagan was president and the FDA approved AZT for AIDS.
I was 39 years old and a litigator at a Philadelphia law firm. My husband and I were enjoying being parents to our 14-month-old son. I paid attention to politics and to women's issues and served as a community volunteer.
I knew nothing about breast cancer. I thought since I had no family history, I did not have to. My diagnosis shocked me. So I responded in the only way I knew how: As a lawyer, I researched, analyzed and strategized. I learned that fewer than 1 in 4 breast cancer patients have a relative with the disease. That I was young to be diagnosed. That I had ER- breast cancer and that had a worse prognosis than ER+. That my cancer had spread to my lymph nodes. I decided to have a lumpectomy and radiation and I chose a different chemotherapy than what was recommended. I wanted something a bit less toxic.
I do recall sitting in the recovery room after my biopsy. The nurse entered the room, looked at me and my husband, and burst into tears. I remember thinking, "Oh my. I am going to die."
Twenty-five years later, I am still here. I don't know why. Twenty-five years later, and much has changed in the world -- the price of gas certainly, and so many other things. But if I were diagnosed today? Not much would be different. I would have the same treatment. And face the same prognosis. And have the same uncertainty. Not much has changed for women with breast cancer.
What troubled me then was that the medical profession had few answers for us. In 1987, the doctors did not know why some people developed cancer while others did not. They did not know why some cancer patients survived while others did not.
While the technology has advanced and we know much more about the science of breast cancer, we still don't know the answers to these questions. We still don't know why some cancer cells appear to be dormant for decades only to reemerge in other organs, or why some women are diagnosed with Stage IV breast cancer while in their 30's. And we still treat women with surgery, radiation and toxic chemotherapy. We still don't have the information we need about breast cancer so women can make better treatment decisions, avoid overtreatment and avoid death from the disease. We still have too many women and men who are dying from breast cancer. We have really learned so little that matters. It still feels like a crap shoot to most women, the same as it did to me 25 years ago.
One change is that today we are swimming in information and in data. The age of genomics is giving us vast amounts of information, as recent publications on breast cancer subtypes and genomics have shown. But gathering information should not be the goal. We are already sitting on mounds of data we do not know what to do with. While the identification of genomic profiles in breast cancer is an important tool that may lead to clinical success down the road, we must take care not to over-promise. Little has actually changed for women and men at risk and those with breast cancer because of this technology.
What does all this information mean for patients and those at risk? What has changed since 1987? More attention on breast cancer and awareness of the disease. More funding for research and organizations. Yes. But what about the things that really matter to women? Less treatment? More lives saved? Not much change there. Back in 1987, a woman's lifetime risk of developing invasive breast cancer was 1 in 8. Today? The same: 1 in 8. In 1987, 40,534 women died of breast cancer. The estimate for 2012 is that 39,510 women will die. Estimated diagnoses for invasive breast cancer have nearly doubled from 130,000 in 1987 to 226,870 in 2012. This is not the change I was seeking 25 years ago.
I have another vivid memory from the time of my diagnosis: Loss of control. I had no control over the fact that I had breast cancer. I couldn't really control the outcome of that diagnosis. I could choose one treatment over the other, but there was no promise that anything would work. One thing I could control though was what I was going to do about that. What I could do to change things for myself and for others.
I was fortunate. Within a few years of my diagnosis, I was invited to a meeting of 60 women (and one man) in Washington, DC to discuss an idea -- a national organization built as a coalition focused on ending breast cancer. That organization would become the National Breast Cancer Coalition. For the past 20-plus years, NBCC has been at the forefront of the fight to end breast cancer, demanding funding for research that saves women's lives, overseeing how those funds are spent, creating programs to provide access to care for uninsured and underinsured women with breast cancer and challenging our nation's leadership to make the end of breast cancer a national priority.
It has been 25 years since my diagnosis and 21 years since I came to the first meeting that launched the National Breast Cancer Coalition. It was two years ago that we set a deadline to end breast cancer by January 1, 2020. And, we have a plan to get there. But we need your help and support. So, take control and take action to create real change in breast cancer. Let's bring about outcomes that matter -- like lives saved. We can control that. When I am a 30-plus year survivor, I don't want to be writing a blog to you that says once again, "Nothing much has changed." Please, join our movement. Together, we can end breast cancer. My life changed with my diagnosis in 1987. I hope we can change the lives of others by saving them from that same experience.