Forty years ago, the radical Halsted mastectomy was the standard treatment of the day for any breast cancer diagnosis. Surgeons removed a woman’s cancerous breast as well as underarm lymph nodes and the chest wall muscles — often before a woman even knew she had cancer, as part of the surgery that included the diagnostic biopsy. A woman went in to see if she had cancer, and came out of her anesthesia missing body parts.
While the medical establishment believed that the most extensive surgery a woman could physically tolerate produced better outcomes, women who were actually living with the disabling results of the radical mastectomy questioned if less might be better, wondering if they could get equivalent life-saving benefit with less harm by scaling back on the extent of the surgery.
Women’s health activists, like Rose Kushner, fought for evidence-based information with which to make their individual treatment decisions: They wanted breast cancer treatment that worked, and they wanted to minimize the harm of treatment. This is an important balance we continue to seek.
As the head of a national breast cancer organization, I know all too well that no matter how long a woman lives after a diagnosis, the tremendous physical, psychological and financial impact of treatment can last a lifetime. Given the toll treatment can take, every woman should be able to make her own decisions about her health care based on her values and priorities — and to do so women need access to independent evidence-based data to inform their decisions.
Clinical trials ended up showing that the radical mastectomy did not save more women’s lives than less invasive and disabling surgery. It is now well established that a lumpectomy can produce equivalent — and some research suggests possibly even better — outcomes than a mastectomy. Today, we celebrate the success of early patient activists in challenging what is now viewed as excessive treatment. And, from them, we’ve learned the lesson that more treatment does not always produce better outcomes.
Fast forward to 2013, and we are again grappling with how much is enough treatment, this time focused on diagnosis and treatment of ductal carcinoma in situ (DCIS), which is a condition of abnormal but non-invasive cells found in the lining of the milk ducts. Because DCIS is non-invasive, this condition is not itself life-threatening. Last week an advisory group convened by the National Cancer Institute recommended that we reclassify ductal carcinoma in situ as precancerous lesions, removing the fear-inducing label “carcinoma.”
For most women diagnosed with DCIS, these abnormal cells will not progress and become invasive. It’s estimated that 20-30 percent of DCIS may go on to become invasive breast cancer.  The problem for women and their doctors is that we cannot currently distinguish between abnormal cells which are likely to progress and require treatment, versus those which are not.
Before 1980, DCIS was rarely diagnosed but today, after three decades of routine screening mammography, DCIS detection has come to represent a quarter all breast cancer diagnoses. And with more DCIS found, more and more women are being treated for these pre-cancers, the majority of which would never have become invasive.
The fact that this much-needed conversation questioning how to treat DCIS is happening with Breast Cancer Awareness Month just around the corner reminds me how we got here. Almost thirty years after the launch of Breast Cancer Awareness Month and the spread of the most successful marketing campaign in history — the pink ribbon — we are seeing the limits and downsides of these “awareness” campaigns.
Like the radical mastectomy during its time, the aggressive push for ever more mammography screening is based on a mistaken belief that breast cancer is a linear disease. Just as doctors used to think that eradicating every errant cell through radical surgery was the key to survival, today women are told by Susan G. Komen for the Cure and others that “early detection is your best protection.” This is just not the case. Not only does mammography miss many cancers, it also finds what are actually harmless, if abnormal-looking, clusters of cells — abnormalities that will never become life threatening and don’t require treatment. We’ve now come to realize that breast cancer is a set of complex diseases and that tumor biology is a more important predictor of one’s survival than size or stage of the tumor — but you wouldn’t know it from the simplistic mainstream messaging we’re inundated with every October.
Despite the billions spent on breast cancer, we still don’t know enough about the healthy breast, how disease develops, which breast cancers will respond to which treatments and which abnormalities can be left alone. Despite all the pink ribbons, all the “breast cancer awareness,” and all the mammograms, little has changed in either the incidence or mortality of breast cancer. Even though more and more women are being diagnosed with and treated for DCIS, there is no corresponding drop in deaths or diagnoses of invasive breast cancer — which we would expect to see if catching breast cancer early, as pre-cancers, were truly effective.
We need to balance the need for effective treatment and appropriate screening with the need to prevent harm from treatment. As many times as we’ve heard a woman say “my mammogram saved my life,” we know there are also times that a mammogram unnecessarily cost her one or both breasts; or even that her breast cancer treatment caused a secondary cancer. The other side of the “life-saving” message needs to be told — we know that women continue to be over-diagnosed and over-treated.
“Breast cancer awareness” has arguably helped de-stigmatize the disease and brought funds and resources to awareness promoters. But it has also spun an overly-simplistic story about breast cancer that distracts us from the real issues surrounding a disease that still kills 40,000 women a year.
As the nation’s attention focuses on breast cancer during Pinktober, let’s stop selling women a false narrative about screening, and instead advocate for more effective treatments, less treatment when possible, and fewer breast cancer diagnoses in the first place. It’s time we change the breast cancer narrative once again.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.