It’s Never Too EARLY to Learn About Breast Cancer
It’s been more than three decades since my sister Suzy’s doctor told her what no woman wants to hear: You have breast cancer. She was only 33. A few years later, after she had died and I had founded Susan G. Komen for the Cure to fulfill a promise I made during her final days, I heard those same words from my doctor — “Nancy, you have breast cancer.— I was just 37.[IMGCAP(1)]There were a lot of myths in those days. Many people thought breast cancer was contagious or was caused by wearing the wrong type of bra. Thankfully, we’ve come a long way.Yet one common misconception still lingers, even among doctors: that breast cancer affects only older women. I can tell you from personal experience that this is not true. While it’s relatively rare, young women do get breast cancer. According to the American Cancer Society, of the 250,000 breast cancer cases that will be diagnosed in the U.S. this year, about 10 percent will be diagnosed in women younger than 45. Breast cancer is the leading cause of cancer deaths in women younger than 40.While a breast cancer diagnosis is devastating at any age, it is especially so for a young woman. It can derail her career path, affect her ability to bear children and to find companionship, and for many, it can lead to premature death. In fact, breast cancer in young women tends to be more aggressive, less responsive to traditional therapies and diagnosed at later stages than for older women.After surviving her own battle with breast cancer, Rep. Debbie Wasserman Schultz (D-Fla.), joined by many colleagues, has introduced a bill — the Breast Cancer Education and Awareness Requires Learning Young (EARLY) Act — to address this myth by creating a public health campaign to educate young women that developing breast cancer, while rare, is possible. More importantly, it seeks to help women establish good breast health habits to follow as they mature and creates support services for young women facing a diagnosis to help them better cope with a range of biological and psychosocial needs that may differ from their post-menopausal counterparts.The bill also seeks to educate health care providers about breast cancer in young women and their special needs. The effort in the House has been joined in the Senate by Sens. Amy Klobuchar (D-Minn.) and Olympia Snowe (R-Maine).A key question for policymakers is whether this misconception still really exists. The sad reality is it does. According to the 2009 Young Survival Coalition constituent survey, an astounding 40 percent of young women with breast cancer didn’t know they could get it before they were diagnosed. Another recent study found nearly 25 percent of young women delayed seeking medical attention and another 25 percent experienced a delay in diagnosis after seeking medical attention. Unfortunately, they and their doctor believed it was just not possible; they were too young for breast cancer.While some people are concerned about whether it’s appropriate to initiate a campaign targeted to this population, I believe this educational messaging, if handled in a factual, age-appropriate manner, can provide women with lifelong healthy practices. At the same time, we must ensure that the educational messages are sensible and don’t create any undue anxiety. For example, we must constantly reinforce the message that genetic testing is not for everyone, and race or ethnic background alone is not a sufficient factor. It’s only appropriate for a small percentage of the population and must be pursued only after extensive consultation with a woman’s doctor and examining family history.We must also be realistic about the relative effectiveness of early detection techniques. Mammograms and MRIs are difficult to read in young women because of their denser breast tissue. Yet the cancer community has experience reaching out to teenagers and other young women about breast health, wellness and cancer in general. We’ve worked through these issues before. That’s why we, like other major cancer organizations, advocate for breast self-awareness. We encourage all women to be aware of how their breasts normally look and feel. If a change is found, a young woman should seek the advice of a health care professional.Outreach to young women also means dealing with quality-of-life issues after diagnosis. Young survivors have to contend with concerns about appearance, fertility, their role in the workplace, etc. These concerns may require additional or specialized consideration by health professionals as part of a young breast cancer patient’s treatment or survivorship planning.The EARLY Act seeks to develop such an evidence-based campaign driven by the advice of a council of medical professionals and patient advocates. The authors’ staffs have worked closely with us and our scientific advisers, as well as others in the science and advocacy communities, to develop and enhance the language of their legislation.The Senate version reflects this ongoing conversation by increasing the targeted age to 45 and younger, emphasizing evidence-based messaging and adherence to the peer-reviewed guidelines developed by the National Comprehensive Cancer Network. We can expect the House version to adopt this language when it is debated in committee.Since this bill was announced, we have seen an outpouring of support from our grass-roots network and the young women we serve. They appreciate the attention to this important group of patients that all too often is ignored by the health care system and the advocacy community. It is true that we don’t have all the answers. But young women today cannot afford for us to wait until we do. There is much we do know and should share. An essential component to saving lives is education.Education is not harmful to women. On the contrary, education is empowering.Nancy G. Brinker is founding chairwoman of Susan G. Komen for the Cure, board chairwoman of Susan G. Komen for the Cure Advocacy Alliance and goodwill ambassador for cancer control at the World Health Organization.