Listening to the Voices of Those With Metastatic Breast Cancer

Catherine-Ormerod 1This week, articles published in the New York Times and The Guardian criticized blogger Lisa Boncheck Adams’ decisions to publicly write and tweet about her experiences with metastatic breast cancer.  Catherine Ormerod, Living Beyond Breast Cancer’s vice president, programs and partnerships, weighs in on this issue. 

This past Sunday former New York Times executive editor Bill Keller wrote an op-ed posing questions about Lisa Boncheck Adams’ public blog about her experiences with metastatic breast cancer. In particular, he questioned the choices she has made as a young wife and mother to extend her life as long as possible through, what Keller termed, “heroic measures”: taking treatments until they stop working and moving on to the next treatment. The treatment that Adams’ has pursued is, in fact, the standard way of treating metastatic disease.

Keller learned of Lisa Adams and her blog from his wife, a journalist whose article for the British newspaper The Guardian pre-dated her husband’s and which examined the use of social media by people with terminal illnesses. That article was so controversial and riddled with factual inaccuracies it has been removed from The Guardian website and replaced by a lengthy explanation of that decision.

Since the publication of Bill Keller’s piece, The New York Times has been in full-throttle damage control as his editorial offended so many individuals.  All mediums—Twitter, letters to the editor, blogs, Facebook etc.— are being employed to register support for Adams and the choices she, her family and healthcare team have made.

Keller defends himself in an interview in the NYT’s “Public Editor” section:

By living her disease in such a public way, by turning her hospital room into a classroom, she invites us to think about and debate some big, contentious issues. I think some readers have misread my point.

Keller got so many things wrong in his op-ed. He now says he was not slamming Lisa Adams, her choices or her right to blog publicly about them, and we hope that is the case. His piece certainly leaves that impression. The main point of his editorial, he says, is that he feels Americans need to examine the relationship between the aggressive fight against terminal disease and achieving a measure of quality of life as one faces death.

At Living Beyond Breast Cancer, we agree that quality of life vs. life-extending treatments is an important subject for national debate. But in the end, this decision rests with each individual facing metastatic disease. Each person has a right to make choices based on individual circumstances and values, and those choices should be respected in all their complexity and diversity. Some will make choices that are hard for others to fathom. And if that individual chooses to express herself publicly, we feel strongly that is her right to write, speak and tweet about it.

Listening to women, providing a forum for them to discuss their experiences with breast cancer and valuing them at every stage of their diagnoses are the principles on which Living Beyond Breast Cancer is built. Since 1991, LBBC has presented the individual stories of people impacted by breast cancer through newsletters, videos, and blogs. In the research and design phase of developing our programs, LBBC engages consumer advisory committees to inform what we write.

We were offended by Keller’s opinion on multiple levels and are pleased that so many have registered their opinions. We invite you to comment on this issue.

Catherine Ormerod
VP, Programs and Partnerships, Living Beyond Breast Cancer
cormerod@lbbc.org

P.S.: If you would like to learn more about palliative care, which Keller mistakenly identifies as hospice care, we invite you to read our guide on the subject, Metastatic Breast Series: Guide to Understanding Palliative Care. 

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3 Responses to “Listening to the Voices of Those With Metastatic Breast Cancer”

  1. MBCNbuzz Says:

    Thank you. Both Kellers’ comments clearly underscore the general public’s misperceptions about metastatic breast cancer.

    Lisa Adams is living with an incurable disease–but nothing she has said indicates she is on her deathbed as the Kellers impy. What Bill Keller terms “Heroic Measures” is “business as usual” for the 155,000 US people living with metastatic breast cancer.

    Some questions neither Keller raised: Is social media inclusive? Are we missing diverse voices dealing with metastatic breast cancer? And more to the point, why is a 40-something dealing with metastatic breast cancer?

    All of these questions would have made a far more compelling OpEd.

    Here is MBCN’s response:

    http://mbcnbuzz.wordpress.com/2014/01/13/bill-kellers-misguided-nyt-oped-piece-mbcn-responds/

    Sincerely,

    Katherine O’Brien
    Board Member
    Metastatic Breast Cancer Network

  2. Marilyn Speedy Says:

    Right on!! As someone who has been living with Metastatic Breast cancer for 9 years, what would he have me do? Stop and give up after the 1st treatment stopped working, and the 2nd and the 3rd? I am on the 4th currently, still love life!
    Wonder if Mr. Keller would feel the same way if if was his wife?

  3. Michael L. Campbell Says:

    What does one expect from the New York Times. Wrong about so many things

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