13. Medical Progress and Stage 4 Breast Cancer, Re-Learning the Lessons from Elizabeth Edwards’ Death

John and Elizabeth Edwards, 2007. Photo Credit: Sara Davis – Getty Images

Originally Published March 14, 2011.

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.”

Judy Woodruff (left) interviews Dr. Julie Gralow (right) on PBS

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.” The realities of a metastatic cancers are are hard for many to hear. The result is that we don’t speak about them. Instead we focus on “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.”

Ms. Edwards did give hope to many. Immediately following her 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 acknowledgement 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.

This essay was republished on March 15, 2010 on the OUP Blog at Oxford University Press.

For more consciousness raising essays, check out “30 Days of Breast Cancer Awareness.”

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8 comments to 13. Medical Progress and Stage 4 Breast Cancer, Re-Learning the Lessons from Elizabeth Edwards’ Death

  • Gayle, another very insightful and thought-provoking essay. We can publish all the breast cancer survival statistics in the world and wax lyrical about the benefits of early detection and breast cancer awareness, yada, yada, yada, but it’s all meaningless if we don’t have the scientific understanding of what causes metastases in the first place. It cannot be stressed too strongly, that metastases can occur at any point in time, regardless of stage at original diagnosis. And there is no way of telling whether a person will metastasize or not. If we could solve the issue of metastases we could get a long way in to significantly reducing cancer mortality rates, and yet metastatic cancer continues to be (im)probably the least funded area for breast cancer research. Indeed, breast cancer metastases receives a subset of less than 2% of all cancer research funding by some estimates. Disgraceful and disheartening to say the least.

  • Thank you for such a thorough discussion of the truth of Stage IV breast cancer. When public figures like Edwards is diagnosed with metastatic cancer, it seems everyone in our society goes into denial, thinking she can just fight and defeat this disease.

    I had a great friend who died of Stage IV breast cancer, and people in our support group thought that maybe she could beat this thing. Treatments helped prolong her life, but she suffered so much through them, that it was hell for her. I will be blogging about this in the near future.

    Thank you for a great posting. By the way, I’ve purchased your book and am really looking forward to reading it!

  • Gayle, I was hoping more attention would be given to metastatic breast cancer following Elizabeth Edwards’ death, but I’m not sure that has happened, at least not in the way I had hoped. I observed my mother suffer through stage IV, have friends there and Know I could “arrive there” at any time myself, so this whole denial of its proper placement in the breast cancer discussion really angers me. Thanks for continuing to speak out about this.

  • Thank you each for posting a comment. I also hoped that attention to metastatic disease would continue to be strong after Elizabeth Edwards’ death. It needs to take center stage, and too many people “arrive there” eventually. I’ll do my best to keep this discussion going. And, thank you Beth for reading PRB. Let me know what you think.

  • Like so many others before her, the focus was on how she was trying to live/survive. If you watch the videos, you see some of the best researchers shying away and skirting around the uncomfortable topic. Women die of this disease. LOTS of women die and the “R” word (recurrence)is buried in the overall process of spinning hope.

    SEER data does not track recurrence. Incidence and death and nothing about the “in between”. Metastases is not recorded. We have no idea how many people are living with metastatic breast cancer in the U.S.. Thee seems to be an effort to keep this population invisible.

    When I asked a top person at the 2010 CPRIT Conference (Cancer Prevention & Research Institute of Texas)why this was so and why that data isn’t part of the reporting process he said, “What is it you want to track? What are the questions?” I was dumbfounded by the utter ignorance and arrogance of his response.

    There will be no substantial progress with that kind of mindset at the helm of the research agendas and funding agencies. We MUST change the conversation and get this out of the shadows.

    Thank you for putting this out there!

  • Brad LePelley

    Thanks for the insight, my young wife who is now 32 y/o has now been diagnosed with Stage 4 Breast cancer. Barely a year after her initial diagnosis of breast cancer. She had the deep flap surgery and just started her reconstruction and was almost done. Now we find this. It is very scary to see this move so quick. She is very optamistic and positive. I am more honest hope she is around for a long time. We have twin 4 year old girls I hope she gets to see them become woman.
    There needs to be more visability on this type. It seems like once you have it they basically write you off.

  • My heart goes out to you and your family, Brad. If you aren’t familiar with metaVIVOR, you might want to check them out. In the meantime, we’ll keep trying to get the word out. The focus has to change.

  • marc abelson

    My girl friend was diagnosed with stage 4 breast cancer. I am not in denial of it. I am very scared of course but science never improves in a linear fashion. It improves in an exponential fashion. Someone out there will have a better idea for a drug, treatment etc. I will remain positive and continue to help her out. I firmly believe that science can get the job done. She has had it for 3 years now and is finishing her masters degree. Elizabeth is a warrior and will be victorious. Marc

"women urged to get screened because it might save their lives. But that’s only 1 possible outcome, and it’s the least likely one" @cragcrest cutt.ly/jei8WJr

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