Health News Review

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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Comments

Chuck Pilcher posted on January 27, 2014 at 10:31 am

I seem to be totally missing the point here. There is no question that we over-treat almost everything in the US. I read Mr. Keller’s op-ed piece and agree with his final quote: “Equal praise is due to those who accept an inevitable fate with grace and courage.” What in the world is all the fuss about?

    Gilles Frydman posted on January 27, 2014 at 10:59 am

    Dear Chuck,

    the fuss is not about the last sentence of Bill Keller’s post or about the last sentence of Emma Keller’s post. It’s about the first sentences of each :-) They both start with false premises and then attack a great writer active in social media, based on these false assumptions. It’s easy to blame them for bad journalism, a valid critic for each piece. I just looked for an explanation that could make sense for such bad behavior on the part of a husband-wife journalistic team.

    2 initial false premises: 1/ Lisa Adams is a stage IV breast cancer patient. That got translated by the Kellers as Lisa Adams is dying. You won’t find anywhere in Lisa Adams writings a mention she expects to die anytime soon. On the contrary. It’s an incredible mistake made by both and there must be a underlying reason why they both start on the wrong foot. 2/ Lisa Adams is undergoing palliative care treatment. Both Keller equates palliative care with terminal care or hospice. Again, a false assumption and one that shows how little they know and understand about current, state of the art treatment of patients with metastatic disease. I could have just said “bad journalism at the core.” I just think it”s so bad there must be some undeclared reason for such obvious mistakes and faux-pas, and looked for such.

    Many others have dissected all the errors found in blog posts and the virulence found in each. Neither post is a valid starting point for the discussion we need to have, as a society, about the many issues related to end of life. Doing so would be a great disservice to all the people who spend their life advancing our understanding of these complex, personal and at the same time, having an impact at the society level.

Aleta Kerrick posted on January 27, 2014 at 1:38 pm

While I agree that Mr. Keller comments about Ms Adams were out-of-line and understand that his knowledge about medical care and statistics was deficient, I also think that much of the outrage directed toward his article has to do with Americans’ discomfort with mortality. If we can’t ignore and deny death, many of us fight it at all costs. (Just look at the hospital in TX that has insisted on mechanically maintaining the body of a brain-dead woman and the sad family in CA who could not accept their daughter’s brain death – and the wide-spread public support both have received.)

While it may not be true in Ms Adam’s case, a patient’s or family’s unwillingness to accept death’s imminence CAN be misguided. The cost to them can be tremendous in physical, emotional, and spiritual comfort, in time and hassles, and in money. It costs medical care providers psychically. It greatly adds to our country’s health care costs.

Mr. Keller broached this issue in a tone-deaf way that comes across as a personal attack on Ms Adams and her choices. But we need to discuss this issue more often and more openly. I suspect the content of his article might have drawn much less criticism if most people, including journalists and medical practitioners, didn’t see fighting tooth-and-nail against death as the only appropriate choice for patients. Unfortunately, the extreme outrage over his article may make others reluctant to bring up the issue in the future.

Leslie Nolen posted on January 27, 2014 at 4:44 pm

Having read Frydman’s post, I’m struck by the sentence ” A 22% 5-year survival rate is not equivalent to an immediate or even certain death sentence.” While he presents this as a factual statement, in truth it’s a highly subjective matter. Many–I would even venture to say most–most folks would be shocked and horrified to learn that they had only a 1/5 chance of still being alive in five years. In truth, many WOULD view it as a ‘death sentence.’

Gilles Frydman posted on January 28, 2014 at 6:25 pm

Dear Leslie:

Let me add a bit about the 5-year survival rate. It is the most basic way to stage any type of cancer, including breast cancer, and is used to assess survival at the population level. It is also called SEER staging because it is used by the Surveillance, Epidemiology, and End Results (SEER) program, a part of the National Cancer Institute. SEER collects cancer data in the U.S. and compiles national cancer statistics. These survival statistics are usually given in terms of 5-year survival relative to the general population (that is, as 5-year relative survival percentages or “rates”).

SEER breast cancer survival rates are vital to researchers, advocates and policymakers. However, they are less helpful in estimating survival for individuals because the stages are defined so broadly. Because survival statistics are based on large groups of people, they cannot and should not be used to predict exactly what will happen to an individual patient. No two patients are entirely alike, and their treatment and responses to treatment can vary greatly. Also, because it takes years to see the impact of new treatments and diagnostic tests, the statistics a doctor uses to make a prognosis may not reflect the effectiveness of current treatments.

For a great personal explanation why these populations stats can be problematic, have a look at “The Median Is Not The Message” from Stephen Jay Gould at http://cancerguide.org/median_not_msg.html. As Steve Dunn explained “As far as I’m concerned, Gould’s The Median Isn’t the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope.”