Progress in Breast Cancer: A Reality Check

I am in awe of the many women and men around the world who share a passion and commitment for our mission to end breast cancer. As I write this, I am surrounded by nearly 1,000 of these advocates who have come to Washington D.C. for several days to "Change the Conversation" in breast cancer. They are here to attend the National Breast Cancer Coalition's 19th Annual Advocacy Training Conference and Lobby Day.

They give so much of themselves to our work. And they are excited by and dedicated to our Breast Cancer Deadline 2020® campaign: the end of breast cancer by January 1, 2020. Since we launched the campaign in September, we have met a number of milestones in our action plan. We reached another at the conference. NBCC released our first of what will be an annual Breast Cancer Deadline 2020® Progress Report, "Ending Breast Cancer: A Baseline Status Report." This baseline report provides a snapshot of the current state of breast cancer and presents a framework for how NBCC intends to ensure meaningful progress toward the deadline. Please download a full copy and read the entire report.

If we are serious about ending breast cancer -- and NBCC is -- we must understand the reality of the disease at every level. Given the attention and resources directed to breast cancer, the public understandably believes that we have made significant progress. The reality of the disease is much harder to accept. In 2011, those who are diagnosed will likely be surprised at how little we know about the important outcomes: preventing breast cancer and preventing deaths from it. While over the past 40 years we have discovered new ways to treat breast cancer, they have not had a great effect on these outcomes.

The numbers tell a compelling story. Worldwide, in 2008, there were 1.4 million women diagnosed with the disease and 458,503 deaths. In the U.S. in 2010, it is estimated that 261,100 women and 1,970 men were diagnosed with breast cancer. And 39,840 women and 390 men died of the disease. That is one death every 14 minutes in this country alone. By any standard, we have not made significant progress.

Here are more surprising numbers and facts. Many point to five-year survival statistics of 98% for early breast cancer as a sign of progress, yet that statistic gives a false sense of security and is misleading. Survival statistics tell us the number of women who are alive at a specific time -- here, five years -- after their diagnosis of breast cancer. Survival statistics do not reflect the real experience of people with breast cancer. Within that number are many women with metastatic disease and women who will recur and be diagnosed with metastatic disease. They will not be survivors. And the statistic bears little relationship to breast cancer mortality; it simply tells us we can find more breast cancers that were never going to be life threatening to begin with.

Women do not die of primary breast cancer. 90 percent of all breast cancer deaths are due to the metastasis -- or spread -- of the disease to other parts of the body. Here is an important statistic: The incidence of women diagnosed with advanced breast cancer has not changed since 1975, despite the emphasis in our country on early detection of breast cancer through mammography and breast self-examination. That emphasis has led to significant increases in the incidence of a precancerous condition known as ductal carcinoma in situ, or DCIS (the incidence increased seven-fold between 1980 and 2007). While the overall mortality rate decreased slightly over a number of years, when we look at how many women are dying each year of breast cancer there has been very little change. In 1991, 119 women died of breast cancer every day. Last year, that number was estimated to be 110. In 2030, with no major changes in prevention or treatment, it is estimated that about 750,000 women will die from breast cancer worldwide. We need to turn attention from just finding more cancer to actually preventing cancer and ending deaths from the disease.

We have made some progress toward developing treatment targeted to different subtypes of breast cancer, based on tumor biology. We have learned that not all breast cancers are the same. But the majority of women still receive the same treatment (surgery, radiation therapy, chemotherapy, and/or hormonal therapy) as though there was no difference among their cancers.

Ironically, much of the recent progress in treating breast cancer has been in doing less. Once we found out that the survival from less invasive surgery, lumpectomy, was the same as for mastectomy for early breast cancer, the standard of care shifted. And recent studies have shown that removing a few lymph nodes has the same benefit with fewer side effects as removing most if not all. These two developments have a major impact on quality of life, but they do not change the mortality statistics.

The current systems of breast cancer research and advocacy, and existing public policy, have been part of the problem in hindering progress in ending breast cancer. Billions of dollars in funding have been allocated to research in both the public and private sectors. Hundreds -- probably thousands -- of advocacy organizations exist in the U.S. to bring attention to the disease. And, since 1991, the U.S. Congress has introduced over 830 resolutions and bills with the words "breast cancer."

But to what end? Incentives are in place that encourage safe research with predictable results that therefore have little chance of making a real difference in the lives of people with breast cancer. Public officials and many advocacy organizations continue to focus attention on early detection and awareness campaigns as the primary approach to addressing breast cancer. Myths and misunderstandings about breast cancer are widespread and promoted in the media and through industry marketing every day. Feel-good messages and beliefs abound.

If we are going to end breast cancer, we need a paradigm shift. More of the same will not produce different results. We owe it to all of our daughters and sons, and granddaughters and grandsons, to try something new.

NBCC advocates have a new approach -- a new strategy -- to change the conversation and to answer key questions in breast cancer to ultimately end the disease by January 1, 2020. We set a deadline to force a focus on the end result. It's never been attempted before.

The plan is to disrupt the status quo on all fronts with the sole purpose of directing attention and resources where needed to achieve Breast Cancer Deadline 2020®. The majority of breast cancer research focuses on finding the next treatment drug; we are focused on two issues:

• Determining the causes of and how to prevent breast cancer metastasis
• Preventing the disease from developing in the first place

Today, we are on Capitol Hill, talking to our members of Congress, sharing our Progress Report and demanding their participation in our plans to make real progress toward ending breast cancer. Tomorrow, we'll return to our communities across the country -- and around the globe -- to continue "changing the conversation."

Breast Cancer Deadline 2020®is a call to all of us who care about breast cancer to push toward the goal. We are calling for a global campaign to end breast cancer by 2020. This bold and radical goal is rooted in our sense of urgency, tenacity and focus.

As I assured you when we launched the campaign, these are not just words. We have a plan, and that plan is now being implemented. I hope you will read our Progress Report to learn more about the details. And, I hope that next year, in our 2nd Annual Progress Report, we will be able to report that we have indeed begun to "Change the Conversation" and make progress toward the end of breast cancer by January 1, 2020.

Breast Cancer Deadline 2020®. The end of breast cancer by January 1, 2020. It's time . . . time for real progress. Are you with us?