Clinicians not following breast cancer screening guidelines

Peggy Zuckerman peggyzuckerman at GMAIL.COM
Tue May 23 16:40:47 UTC 2017


Dear Burke,
It is the rationing of screening, diagnostic testing and treatment that
immediately impacts the patient.  It is obvious that this had immediate
impact on those with chronic diseases or those which may require a more
complex diagnosis.  No group of patients is more aware of this than cancer
patients.  On patient forums, the UK patients express general frustration
in getting an adequate and complete diagnosis, and are shocked to think
that the US patient could get a CT within days, or have the range of
medications not supported through the NHS.

The international patient forums are good source of the differences on the
ground of the two systems.  And despite the many issues we have about
insurance and the uninsured, it seems more callous not to provide a drug
which has been proven to be effective, as those Quality of Life measures do
not encompass well the issues of someone who is getting a Partial Response
or Stable Disease with that medication.  Since all of this is based on
trial data, the failure of the design of the trial to monitor all responses
or to place the medication in a sequence of care can severely limit the
choices to the patient.

Sincerely,
Peggy Zuckerman

Peggy Zuckerman
www.peggyRCC.com

On Tue, May 23, 2017 at 5:25 AM, Burke Harry <harry.burke at gmail.com> wrote:

> Some people believe that the only cost difference between the UK and US is
> waste, i.e., the administration of a payment system and company profits.
> But the UK has administrative costs and company profits are only a few
> percent of revenue. The largest single difference between the two systems
> in terms of cost is controlling clinician salaries and the rationing of
> screening, diagnostic testing, and treatment preformed by guidelines.
> Restrictions on diagnostic testing will reduce diagnostic accuracy - by how
> much is uncertain.
>
> On May 22, 2017, at 12:31 PM, Peggy Zuckerman <peggyzuckerman at GMAIL.COM>
> wrote:
>
> I am interested in this issue of mammograms, guidelines and referrals as I
> review my own actions years ago and think about my three daughters.  Once I
> was really past child-bearing age, and my doctor had moved, I struggled to
> find a doctor who was available, taking new patients etc.  At the same
> time, it was very difficult to get into a mammogram center, as they were
> booked six months in advance.  Pretty easy to delay in that case!
>
> Also, during those 15+ years I was so very healthy, that I did not see a
> doctor.  Afterall, doctors were for sick people.  No lack of access, decent
> insurance, and 'no need'.  A relative with breast cancer demanded I get a
> mammogram, which was fine.  Then I was diagnosed after a long misdiagnosis
> with kidney cancer.  Though I got through that, I somehow felt that I had
> had my cancer, and again delayed a mammogram.  That was three years ago,
> when my 65th birthday and a new doctor ordered one.
>
> How many other 'healthy' women, with no history of cancer, some difficulty
> in getting a mammogram and relying only a sporadic care are there NOT
> asking for mammograms?  Thus, when someone presents to a doctor with
> concerns about a lump or a family history, that person should be taken
> quite seriously.  Similar issues with kidney cancer, with urinary issues,
> occasional passing of blood, or unexplained anemia and weight loss, and
> often these concerns are dismissed.
>
> To most patients and those who have any sort of problems accessing a
> doctor, or have had their concerns dismissed in the past, the mixed
> messages about mammograms, cancer testing, and overdiagnoses, it become
> very difficult to know if they will get a straight answer, and if the
> medical world is as reliable as we want it to be.
>
> I would like to see more public service announcements that make it very
> clear that there are many types of breast cancers and kidney cancers, and
> so on. Patients need to understand that complexity and uncertainty exist in
> the medical world, and so do options for second opinions and treatment
> plans.
>
> Peggy Z
>
> Peggy Zuckerman
> www.peggyRCC.com <http://www.peggyrcc.com/>
>
> On Mon, May 22, 2017 at 8:25 AM, HM Epstein <hmepstein at gmail.com> wrote:
>
>> 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:
>>
>> This message was sent securely using ZixCorp.
>> <http://www.zixcorp.com/get-started/>
>>
>> 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 <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.
>>
>>
>>
>> Get Outlook for iOS <https://aka.ms/o0ukef>
>>
>>
>>
>> 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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>> Moderator:David Meyers, Board Member, Society for Improving Diagnosis in
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>>
>> To learn more about SIDM visit:
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>>
>> --
>>
>> *Edward B, J. Winslow, MD, MBA*
>> Home 847 256-2475 <(847)%20256-2475>; Mobile 847 508-1442
>> <(847)%20508-1442>
>> edbjwinslow at gmail.com
>>
>> winslowmedical.com
>>
>>
>>
>> "The only thing new in the world is the history that you don't know"
>>        Harry S. Truman, 33rd President of US (1945-1953)
>>
>>
>> "... it can be argued that underinvestment in assessing the past is
>> likely to
>> lead to faulty estimates and erroneous prescriptions for future action."
>>         Eli Ginzberg, 1997
>>
>>
>>
>>
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>> Moderator:David Meyers, Board Member, Society for Improving Diagnosis in
>> Medicine
>>
>> To learn more about SIDM visit:
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Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine


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