A patient advocate’s powerful piece on Lisa Bonchek Adams and the Kellers’ criticism – the DCIS Sea of Uncertainty

I’ve been slow to comment on the firestorm of criticism that arose when Emma Keller of The Guardian questioned the Twitter messages by Lisa Bonchek Adams, a young woman with stage IV breast cancer. I haven’t felt the need to comment since so many people have done such a thorough job of writing about this topic.

Brief background, in case this is new to you:

Ms. Keller lit the fire with her piece which was subsequently pulled by the newspaper, as seen in a screenshot below.

But then Ms. Keller’s husband, former New York Times executive editor Bill Keller, now an op-ed columnist for the Times, wrote a column that mirrored many of the same sentiments.

The combination of the two opinion pieces by Mr. and Mrs. Keller were variously described as attacking, appalling, astonishing, inaccurate, startling, tone-deaf, unethical, vitriolic and much more.

There was so much wrong with the Kellers’ approach and what they wrote that it gave critics ample ammunition.  And fire away the critics did.  Some samples:

But one of the most thoughtful pieces was by Gilles Frydman, one-time founder of the Association of Cancer Online Resources (ACOR.org) and more recently co-founder of SmartPatients.com.

He called his piece, “A Perfect Storm in the DCIS Sea of Uncertainty:  Kellergate.

Frydman hit on a theme that may have eluded many observers:

One aspect has been almost lost, or at least has become irrelevant in the continuing brouhaha about social media. Both Lisa Adams and Emma Keller were originally diagnosed with Ductal Carcinoma In Situ (DCIS). DCIS is a non-invasive form of breast cancer, whose diagnosis is almost exclusively from mammograms.

DCIS is the poster child for the resulting Sea of Uncertainty.

Some lesions will progress to cancer, others will not. Some women with DCIS will develop cancer elsewhere in their breasts, whereas others will not. (Some women will develop distant recurrences while most won’t). And no one is sure what the chances are for any given individual.

[…]

Although no one is sure what the probability of progression is, studies of DCIS that were missed at biopsy and the autopsy reservoir suggest that the lifetime risk of progression must be considerably less than 50%.

In 2014 uncertainty will still reign supreme for more than  57,000 American women diagnosed in the gray zone of non-invasive DCIS. Virtually all of them will get some surgery due to the uncertainty.

Frydman also reflects on his wife’s diagnosis with DCIS 18 years ago.

And then he reflects back on what Emma Keller wrote in 2012 about her diagnosis and treatment choice.

I can’t do justice to Frydman’s piece by excerpting it.  Please read it yourself.

One other noteworthy DCIS item this week:  journalist Karen Brown’s piece in the Boston Globe about her own DCIS diagnosis and treatment, “When the writer becomes the patient.

Often, when I speak to journalists, I urge them to write about DCIS.  Often, I’m surprised at how many in the audience don’t know what I’m talking about.  That should change.

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