Clinicians not following breast cancer screening guidelines

HM Epstein hmepstein at GMAIL.COM
Mon May 22 15:25:21 UTC 2017


In reply to Dr. Tommaso:

Thank you for your comments. And you make many excellent points. My questions were about the relationship of the best and the worst physicians and specialists with regards to following guidelines but I would love to respond to your questions and comments. This is one of the reasons I enjoy the SIDM listserv so much.

I agree that my mother-in-law's physician was negligent. He was especially negligent in that he never examined the lump. But it was also a cognitive bias because in his experience a woman of her age couldn't have breast cancer so how could the lump be malignant? The guidelines of that time backed him up. 

And of course I understand that guidelines are not written around individual cases. Plus, I recognize that availability bias means that personal experiences can magnify the exceptions.  My experience means that I would review the guidelines suspiciously. I own up to my cognitive bias here. But so might the physicians caring for these women who are not related and live in different neighborhoods in different states. They received treatment, life-saving to date for most of them, because their physician went outside the guidelines.  But it is because of anecdotal data and news stories that we were able to recognize breast-cancer hotspots in certain areas of the country, like Nassau County, New York. The guidelines needed to be expanded in those areas because women were dying. 

Lastly, health policy/guidelines are as much science as they are politics. I brought up the competing guidelines for tick-borne diseases like Lyme as an example of this. How many advocacy groups have been able to effect change in the current guidelines for the disease by which they are affected? These are all good reasons why patient advocates and patients are now included in more clinical studies and guideline reviews. 

I'd like to see your statistics on how PCPs and self referrals are the most common sources for mammograms. I have not read a study on this, though I would be glad to research it when I'm not where I am currently. My thought process was simply that  OB/GYNs have the broadest definition of who should have a mammogram so they would send more of their patients to get one. And most insurance companies do not permit self referrals for mammograms. A prescription is required. Finally, for many women, their OB/GYN is also their PCP.

I'm not anti-guideline obviously. But it is not a document set in stone. It must be reflective of new proven data. Changes come slowly and specialists who rely only on the guidelines are doing a disservice to their patients who are outliers. Personally, I would listen to a physician or surgeon with many years of expertise in a specific field who chooses to go outside the guidelines to care for me. Wouldn't you?

Best,
Helene

Sent from my iPhone

On May 22, 2017, at 8:47 AM, Tommaso MD, Laura <ltommaso at NCH.ORG> wrote:

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The Dr. who dismissed your mother-in-law’s breast lump was negligent. In the case of palpable masses, screening guidelines do not apply. You would order diagnostic, not screening, mammogram and further management would be overseen by specialists.
 
The 5 women that you know who were found to have cancers (while an enormous and tragic coincidence-unless they were all related in which case, not average risk) is an example of anecdotal and not scientific evidence, and not how we write health policy/guidelines. We can’t screen everyone for everything-there are cancers we don’t screen for at all...  
 
And where are you getting the info that OB/gyn prescribe most mammograms? I believe PCPs and self-referrals are the most common.
 
From: HM Epstein [mailto:hmepstein at gmail.com] 
Sent: Monday, May 22, 2017 12:42 AM
To: Society to Improve Diagnosis in Medicine; Tommaso MD, Laura
Subject: Re: [IMPROVEDX] Clinicians not following breast cancer screening guidelines
 
I have so many thoughts and questions about this. Guidelines are necessary tools especially when they evolve at the speed of research. However, too often, they seem to serve interests other than the patients. The bitter, competing guidelines for tick-borne disease from the IDSA and ILADS are an example. Breast cancer may be one as well. 
 
But when I think about this from my experience and from a patient point-of-view, official guidelines become less valuable. As a physician, your training may not be required for the average patient who fits all of the guidelines. A solid diagnostic software and a trained PA or RN could be sufficient. 
 
Where your experience and skill are most needed are for the patient who doesn't fit the guidelines, the outlier. The ones who heuristics miss. Guidelines aren't helpful for those patients. Your training is. I'm glad that SIDM is working to create a new course on diagnosis for med schools. It's much needed. 
 
For background:  This is how my mother-in-law died at the age of 41. She went to her ob-gyn when she was 40 and told him she found a lump. He told her not to worry and don't be silly. That she was a young woman and didn't need a mammogram. She died a year later leaving behind three children. Her brother sent an anniversary card to the doctor every year that simply said, "[X] years ago you killed my sister." Was the ob-gyn following the guidelines of the 80s or was he just a poorly informed physician?  
 
The guidelines talk about the harm from an annual mammogram. It's not too much radiation. Is it false positives? That describes my unnecessary breast cancer surgery at 50. But I was within the new age guidelines. So the guidelines didn't protect me from Dx error. 
 
I personally know 5 women who had staged cancers (stages 2-4) in their 30s and 40s. All had double mastectomies. One died. The others haven't, yet. Only the ob-gyn guidelines protected them, which is where most women get the Rx for a mammogram. 
 
On the other end of the spectrum, my 88-year-old aunt has had breast cancer three times since her late 70s. Another outlier. She is like my mother, a super-ager. As baby boomers age we expect more super agers and they will defy or delay most of the assumptions about geriatric patients. 
 
As I write this, I'm sitting by the hospital bedside of my dad who has defied all expectations yet again just weeks shy of his 95th birthday. A few days ago my sister and I jumped on flights to Florida so we would have time to say goodbye. He may not make it another week. Or he might last another year. Last night at 11pm, he practically dragged two RNs holding a leash on him and a CNA around the corridor because he wanted to go for a fast walk with his walker. This after several weeks of Dx error that nearly killed him. Perhaps he's been dismissed because he's so old. Or perhaps he just never fit the guidelines of the diseases he has. 
 
How is one to know?
 
Best, 
Helene 
 
 
 
 
Sent from my iPhone

On May 21, 2017, at 7:02 PM, Tommaso MD, Laura <ltommaso at NCH.ORG> wrote:



Consider my hypothetical situation as it was intended: as a response to the article. And shared decision making is just that.. so if women still want their mammogram, that's an explanation as to why doctors are not following the guidelines. 
 
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On Sun, May 21, 2017 at 1:57 PM -0500, "Albert Wu" <awu at JHU.EDU> wrote:

Hopefully you would have discussed the risks and benefits with her and allowed her to make the decision about what to do
 
In the US this might including having to pay an additional amount if it were not covered by her health insurance – but she should be helped to decide
 
Albert
 
From: "Tommaso MD, Laura" <ltommaso at NCH.ORG>
Reply-To: Society to Improve Diagnosis in Medicine <IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>, "Tommaso MD, Laura" <ltommaso at NCH.ORG>
Date: Sunday, May 21, 2017 at 12:43 PM
To: "IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG" <IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG>
Subject: Re: [IMPROVEDX] Clinicians not following breast cancer screening guidelines
 
 
Imagine a 40 year-old average risk pt presents and requests to get a mammogram. You tell her that it not the current recommendations of some of the governing bodies that set guidelines and the associated risks/benefits. She gets breast cancer at 42 and was found at a late stage.  She had asked you for the mammogram..

From: Edward Winslow [edbjwinslow at GMAIL.COM]
Sent: Saturday, May 20, 2017 7:08 PM
To: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
Subject: Re: [IMPROVEDX] Clinicians not following breast cancer screening guidelines

The Medscape article is fairly unbiased. 
 
One problem with our current guideline process is the plethora of guidelines available. The national guideline clearing house has between 32 and 52 sets of guidelines on breast cancer screening. While the USPSTF guidelines are probably the least biased, other well meaning people with or without any of several potential biases, may believe another set of guidelines. 
Quis custodiet ipsos custodes? Literally translated from the Roman Poet Juvenal as "Who will guard the guards themselves". In this context I meant a more focused use of the concept. "Who will guide the guideline writers".
 
On Fri, May 19, 2017 at 11:36 AM Elizabeth Cohen <lesotholiz at gmail.com> wrote:
http://www.medscape.com/viewarticle/878405#vp_2
 


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