Re-learning the lessons from Elizabeth Edwards’ death

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On medical progress and stage 4 breast cancer

By Gayle A. Sulik

Elizabeth Edwards died from stage 4 breast cancer (also known as metastatic breast cancer) on December 7th, 2010 at the age of 61. Ms. Edwards was a well-known public figure, notably the wife of former Senator John Edwards, and an accomplished lawyer, author, and health advocate. Her death inspired new discussions of Stage 4 breast cancer, finally shining a light on what has been a relatively invisible segment of the breast cancer community: the diagnosed who live from scan to scan, treatment to treatment, with the knowledge that neither medical progress nor positive attitude will likely keep them from dying from breast cancer.

Following Ms. Edwards’ breast cancer diagnosis in 2004, she quickly became a celebrity survivor. She expressed optimism about cure and continued to pursue an active personal and professional life. After learning in 2007 that she had a recurrence which had already spread to her bones, Ms. Edwards still looked for a “silver lining” despite the fact that her breast cancer was no longer considered to be curable. At that point, doctors called her breast cancer “treatable” – meaning that she would be in some kind of therapy for the rest of her life.

Ms. Edwards knew that she might not live to see her children grow up. Yet  public discussions were hesitant to acknowledge this reality. I remember the PBS news report that featured clips from a press conference in which Edwards’ medical doctor, Lisa Carey of the University of North Carolina Breast Center, stated that many women with stage 4 breast cancer “do very well for a number of years.”

In the interview that followed with Dr. Julie Gralow of Fred Hutchinson Cancer Research Center, the discussion of prognosis was similarly vague. Dr. Gralow rightly revealed that doctors have “no crystal ball” to see the future and that average survival rates cannot be used to predict an individual’s life span. However, she also circumvented the prognosis issue by using phrases such as “years of survival” and living out “long lives.” We heard about “terrific new therapies,” “great treatments…that don’t cause a lot of symptoms,” and and a new “era of personalized cancer therapy.” Dr. Gralow stressed that Ms. Edwards gives hope to those who are fighting metastatic breast cancer and that “her biggest issue is that she has a couple of young kids to raise.”

Immediately following Ms. Edwards’ death, Dr. Barron Lerner wrote a warm, thoughtful, and informative essay in The New York Times about the lessons society can learn from Ms. Edwards, including the limits of current treatments and the dubiousness of the term “survivor” that, while empowering in some ways can be misleading in others. For the 49,000 new people each year who develop what amounts to be a terminal breast cancer condition, the term can be empty if not infuriating. He acknowledged further that, “there was no way to sugarcoat the latest news.” Finally, some of the truths about metastatic disease were revealed without the sweetness and hype.

The Times continued its reporting of metastatic breast cancer a month later in “A Pink-Ribbon Race, Years Long,” which spoke about the limitations of medical progress for this segment of the diagnosed. Statements from notable medical doctors acknowledged that, despite the fact that stage 4 patients “enjoy a higher quality of life than patients did in the past, because treatments are better focused and have fewer side effects,” these treatments add only an “incremental amount to the length of life.” Likewise, according to Dr. Susan Love, “The average survival of women with metastatic breast cancer from the time of the first appearance of the metastasis is between two to three and a half years.” Although no one knows where an individual prognosis fits within average survival statistics, Ms. Edwards’ passage from breast cancer diagnosis (2004) to recurrence (2007) to death (2010) reveals this timeline with unsettling clarity.

Elizabeth Edwards’ journey with breast cancer tells a story of survivorship that is complicated and tragic. Except for its public character, it is not unlike those of the 40,000 women and hundreds of men who die from breast cancer every year. Though she could have been an outlier like the occasional woman who has metastases throughout her bones and is alive 20 years later, outliers do not negate the patterns. Stage 4 cancers of all types are the silent killers and, surprisingly, the least funded categories of cancer in terms of research.

Despite the lessons we can learn from Elizabeth Edwards, there is a strong societal push to see the cancer glass as half full, particularly when focusing on survivorship statistics as indicators of medical progress. Although there has been a 20 percent rise in cancer survivorship overall from 2001 to 2007, The New York Times reports that “the death rate from cancer…has stayed virtually the same as it was in 1950.” Yes, 65 percent of cancer survivors have lived at least five years since diagnosis, 40 percent have lived 10 years or more, and nearly 10 percent have lived 25 years or longer. In turn, 35 percent will have died in five years, 60 percent will have died in ten, and, for 65 percent of the diagnosed, cancer will be the eventual cause of death. A glass that is half full is also half empty.

I want to have hope for my friends and family members who are dealing with aggressive and late stage cancers. I even wish for miracles. But hope for a society wrestling with cancer wrests upon the clear acknowledgment that the only true indicator of medical progress overall would be a significant reduction in the number of deaths and vast improvements in quality of life. For the term survivor to have meaning in this situation there must be an understanding that at stage 4, the only way to “survive” breast cancer is to die from something else. As a society, we’ve got to do better than that.

Gayle A. Sulik, Ph.D. is a medical sociologist and was a 2008 Fellow of the National Endowment for the Humanities for her research on breast cancer culture. She is author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health. You can read her previous OUPblog posts here and learn more on her website, where this article originally appeared.