Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.

Who's Got My Back?

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Last week The New York Times published a front-page feature about how diagnosing breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant. The article goes on to discuss how advances in imaging present serious challenges to pathologists, particularly with borderline breast lesions, for example, resulting in both over-treatment & under-treatment. It recounts the stories of women who unnecessarily underwent surgery and radiation treatment as the result of what appears to be some combination of ambiguous findings and pathologist error.

What does this report mean about the diagnosis of other irregularities and malignancies, breast and otherwise?'  Do I need to seek a pathology second opinion? Can I trust a negative mammography report?

This article comes a couple months after another front-page feature in the NYT about the danger of poorly calibrated radiological equipment that has delivered dangerous in some cases fatal ' doses of radiation.'  Loose regulation and monitoring resulted in devastating injuries to a number of people across the country.

 

Guess I should be checking up on that too when next I'm scheduled for radiation  Hey!  I wonder if this lax attention extends to X-rays and MRIs?

It comes two days before the Journal of the National Cancer Institute published a study showing that the relevant major peer reviewed journals published information required for a physician to prescribe and monitor new cancer therapies was included in only 11 percent of the articles on cancer treatment in articles appearing between 2005-2008.'  http://www.ncbi.nlm.nih.gov/pubmed

 

Well then, where does my doctor get the information she uses to treat me?

And all these news reports drop into a constant stream of new revelations that pharmaceutical companies are hiding data showing that commonly used drugs pose serious health risks'the past few months the focus has been on Avandia, but that is only the latest in a long series of disclosures about new and old drugs.

What do you make of this?

The uncertainty and risk are probably the same as they have always has been. They're only now being measured and documented and reported on. Even so, when I view these reports cumulatively, the self-interest of each of the players health plans, doctors, safety monitors, pharmaceutical companies is evident. Conversely, these reports reveal how the responsibility of each player for the safety and health of the public is of lesser concern to them...but more, apparently, to us.

Because by implication, once we know about these deficits and dangers in health care, it is our responsibility to track them carefully and then try to reduce them for ourselves and for those we love. We have to do the research, get the second opinions, and double-check every treatment plan, every drug prescribed, every X-ray machine and every pathology report or we risk adding injury to our illness. We have to ask these questions and resolve disparate answers.

Is there an alternative response? This is a heavy lift for most of us. Who has got our backs?

 

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


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Evidence-Based Medicine   Jessie Gruman   Find Good Health Care   Lifestyle and Prevention  


Comments on this post
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Dyck Dewid says
July 27, 2010 at 3:17 PM

I've felt pretty alone in my efforts which mirror much of what you're talking about. It's a huge effort to be participative in one's own health, and care, and treatment, and to protect one's self from a continuously stormy sea full of hungry serpents and dragons, and with few lighthouses and havens. My wife has dementia and so I am on guard for both of us. And then there's my daughters, who are self sufficient but young. So, I am a confidant and source to them too..

I got involved with Health Care Reform last year to see if I could figure out a way to have a voice in my government. I recognize my voice and my unique gifts are tiny. So, I think of how they maybe are naturally integrated in my everyday life.

I simply want to live and let live. And I am learning how to live. And it's not necessarily the same as others, or main stream.

The aim of your blog seems aligned with others that I participate with. Some are, Society for Participative Medicine, Slow Money, Be Each Others Health Care, Integrative Medicine, Sun Magazine to name a few. These are all empowering to some degree. Thank you for your efforts here. I will promote it too.