Confused About Breast Cancer? I'm Not

02/15/2012 03:36 pm ET Updated Apr 15, 2012

As a breast cancer survivor and the President of the National Breast Cancer Coalition, I watch coverage of breast cancer with more personal interest than I do other news. So last Monday when I opened my email and read my daily news report, I was stunned to see there were nearly 250 media hits. That's triple the news reach during Breast Cancer Awareness Month. It seems everyone -- even people who normally never talk about breast cancer--are now talking about it.

But are they talking about the breast cancer issues that really matter? Unfortunately, not at all. They seem confused about what the important issues are. We need to change the conversation. We need to harness this passion for women's health and breast cancer and refocus it on what really matters. We need to talk about how to end breast cancer.

The recent firestorm around the Susan G. Komen for the Cure grants to Planned Parenthood highlighted for me the wrong-headed focus of most breast cancer conversations. The backlash against Komen primarily came from the belief that their action was motivated by political considerations. The backlash wasn't totally about breast cancer.

The part of the conversation that did relate to breast cancer, however, focused on screening and about how terrible it was that this "life saving intervention" was put at risk for political purposes.

Let's not confuse the issue: if we want to make progress in breast cancer -- meaning if we are in this to end breast cancer -- then we are having the wrong conversation about this disease. The confusion begins with an apparent misunderstanding of screening: screening is looking at a healthy population for problems. Many of the stories on Planned Parenthood's website are about women who found a lump and went to get it checked out. That is NOT screening. That is diagnosing an existing symptom. And no one would argue against the importance of doing that. Planned Parenthood is doing a good thing in that regard.

Adding to the breast cancer confusion, Planned Parenthood issued a statement referring to screening as "life saving breast cancer prevention care."[1] Well, they got it wrong. As does Komen, with other screening pronouncements.

Let's not confuse screening with prevention: screening does not prevent breast cancer. Screening is meant to find breast cancer that already exists. The hope is that it will do so at a time when treatment will save a life. Because the end point we should care about is mortality. However, despite what we may have been led to believe, screening has not led to great progress in saving lives. You see, well done clinical trials -- and several of them -- show that, at best, screening mammography results in a less than a 15 percent reduction in the mortality rate. That translates to an absolute risk reduction of just 0.05 percent [2]. And at least one well-done review of several of those screening studies shows that screening also leads to 30 percent over-diagnosis and over-treatment [3]. The review authors conclude that it is not clear whether screening does more good than harm. Remember, when we over-treat, it is with substances that also can cause harms and even death [4].

There is also confusion around the concept of "survival statistics." For example, Komen often states that we are making progress because five year survival rates now are 98 percent for breast cancers detected early[5]. Using five year survival rates as a measure of success is just plain wrong. The reality is that five year survival rates tell us we have done a great job of screening, but they do not tell us who will die of breast cancer. They have little relation to the mortality rate[6]. Consider that approximately 20 percent to 30 percent of women will have a recurrence of their disease. [7] Survival statistics include these women, many with metastatic disease and many who will be diagnosed with metastatic disease once those five years pass by -- most of whom will not survive.

We all want to believe that breast cancer screening saves lives. But if it does, it saves few and we need to do much, much better. If we continue with this conversation we will stop looking for real prevention. And if we continue to put screening on a sacred pedestal, we will ignore the most important issues in breast cancer and do more harm than good. That is indeed unfortunate.

So what should the breast cancer conversation be? Let's talk about how we can end breast cancer. Let's figure out what we need to do to get there. And then do it. Let's look at areas that get too little attention: How do we stop people from getting breast cancer in the first place? And how do we stop people from dying of it? Let's stop confusing the issue by placing so much emphasis on screening.

We all want to make a real difference, to save lives, to end breast cancer. Let's focus on the important issues that will actually get us there. You can start now by joining a meaningful conversation about breast cancer. Find us and "Like us" on Facebook at "StopBreastCancer." Next, sign a statement of support on our website at And finally, sign our petition to the President and tell him it's time to take a leadership role by making a public commitment to end breast cancer by the end of the decade.

The end of breast cancer -- that's the goal. January 1, 2020 -- that's the date. No confusion there.

2. Gotzsche PC, Nielsen M. Screening for breast cancer with mammography. Cochrane Database Syst Rev. 2011;1:CD001877

3. Nelson HD, Tyne K, Naik A, Bougatsos C, Chan BK, Humphrey L. Screening for breast cancer: an update for the U.S. Preventive Services Task Force. Ann Intern Med. 2009;151:727-37

4. A recent overview of these issues can be found in The Cancer Letter, Vol. 38, No. 6, Feb. 10, 2012

6. Welch HG, Schwartz LM, Woloshin S. Are increasing 5-year survival rates evidence of success against cancer? JAMA. Jun 14 2000;283(22):2975-2978

7. Soliman H. Developing an effective breast cancer vaccine. Cancer Control. Jul 2010;17(3):183-190