No one here is quite saying this, but since it comes up in Orenstein's op ed piece, I'd just like to get it off my chest here (no bad pun intended).  Seems as good a place as any! Sorry Iwannacookie if i"m hijacking a little bit…but it is somewhat relevant to your situation too.

I must say that I find the characterization of some women's medical decisions as  'emotional'  patronizing and condescending. I feel that it is only women who would be so characterized as making decisions that are 'emotional', and therefore this characterization only occurs with CPM (pertains only to women). As a feminist I am offended at the general nature of the discussion by the medical establishment in those terms.  I can't think of a single other surgery that is so discussed and written off as "emotional" (see: opting for full thyroidectomy when partial may only be surgically indicated; etc).  Even Ms. Orenstein characterizes her own self (the one that briefly wanted a CPM until of course the logical male- coincidentally! - doctor explained things to her) as someone screaming like her bc/breasts were a cockroach, "just get it off!", just get it off!". I personally have no knowledge but  that may well have been her:  self described as hysterical and frantic.  

Others come to the CPM decision through a much more cool (dare I say rational?) analysis. Like you, Iwannacookie. And as I believe I did. 

I suppose what bothers me is that this word "emotional" is used, versus "intellectual."  They are set up as polar opposites.  I read that as, in other words, one point of view is rational ("intellectual") versus the other which is irrational ("emotional").  Not based on evidence.  How about the evidence that your individual risk of a second bc is "X", higher than the average breast cancer survivor? How about the evidence that your missed cancer will require much more surveillance/screening modalities? How about the evidence that you are already having problems with your insurance / costs /appointments this time around?  How about all kinds of evidence that might figure into an individual's decision?

I think what has happened in part is that surgeons have seen lumpectomy as a great advance. Rightly so. Yet, not everyone  has embraced it as such. So the med establishment sees something as 'wrong': maybe the message isn't clear. Maybe women don't understand. Maybe, just maybe, they are all frantic and hysterical, emotional. It isn't because women are irrational and ignore evidence. Quite the contrary. They see the evidence.  And they decide for their own lives what is most in their best interest at the time of decision-making. This is a decision they are uniquely qualified to make-more so than the surgeon.  For some women (me!) it was/is not simply a matter of looking at the problem at hand and how to solve it. Of course women understand that when their doctor says lumpectomy can solve the immediately presenting bc problem, that it can. And they understand if it has metastasized, bmx won't save them.  Women base their decisions on a whole context of other factors that are, in a sense, quality of life, for them. And that's not ignoring evidence. On the contrary, it's very much considering the immediate evidence at hand, and then some. 

Thanks for letting me sound off on one of my pet peeves (the persistent characterization of women's decision for CPM with no BRCA as "emotional").  Whew. ;o)

jessica...not sure if you are a Sting fan...he is coming out with a Broadway play based on his life living in a poor shipping town.  One of the songs which I adore is titled Practical Arrangement.  Why not watch his sing it on YouTube.  The song is about a man who asks a widow with a young child to marry him...for practical reasons.  He also hopes that one day in time they will eventually fall in love....You see...there are differences in the ways we come to making decisions.  It certainly would be nice if we could take emotions out of the equation when making decisions....the bottom line is that all of us lean one way or another and it is good to know where each of us stands....

I will add my two cents here and ask why does the decision have to be intellectual or emotional?  Why can't it take both into account? 

Statistics and data cannot incorporate QOL issues like stress/anxiety over future screening, my health today and ability to undergo surgery, my current support network, my financial or work situation, how I would feel without my original breasts, etc., etc. 

Iwanna --you mentioned a while back that you thought mental health was as important as physical health -- I think that's a very important statement to remember in this decision as well.  I'm sorry you had that conversation with the scheduler, who I don't believe should have a say in the decision.  I hope you have a chance to have a good discussion with your surgeon and move forward with whatever decision is right for you.

I think that emotional decisions are not all the same thing.  Emotional decisions that defy the facts and are based simply on avoiding something unpleasant are very different from emotional decisions that take into account how one feels about the decision and being realistic about future implications.  The latter being a decision based in reality and indicates strength and insight.  I only wish all decisions, by both men and women could be emotional.  The strongest people I have met have all been emotional and therefore take responsibility for their decisions and how this impacts themselves and those around them. 

Ridley...I honestly don't think there is a middle ground.  Either one looks at the data and decides based on the numbers or one decides to reject the numbers and decides based on emotion.  I disagree with Jessica that one is based on supposedly being rational and the other supposedly being irrational.  It simply is what it is.  Bottom line, if more patients based their decision on statistics, there would be fewer BMXs.  Clearly, many women are basing their decision on emotions, because there has been a sharp rise in the number of BMXs.  It is simply a fact. The other issues that you mention tie into emotion.  Once again, I wish to mention Otis Bradley's book, How We Do Harm.  In the book he explains that more care does not necessarily mean better.  What each of us needs to realize is how do each of us chose the care we receive.  None of us will ever know if we chose correctly until we die from something else and therein lies the quandary for all of us.

THE ASCO POST: Sharing Treatment Decision-Making With Patients: Where’s the Evidence of Value?By Caroline Helwick
December 15, 2013, Volume 4, Issue 20

Though certainly not new to oncologists, “shared decision-making” between doctors and patients is receiving increased attention in the medical community today. While it’s an idea with merit, Steven J. Katz, MD, MPH, a specialist in quality care issues, maintains that expectations about the potential value of shared decision-making may be too high. 

Dr. Katz is Professor of Medicine and Health Management and Policy at the University of Michigan, Ann Arbor, and a member of ASCO. He heads up research projects on the quality of cancer care delivery, including a National Institutes of Health–funded study aimed at better understanding treatment decision-making.

Dr. Katz recently authored a “Viewpoint” appearing in the Journal of the American Medical Association, questioning the quality of the evidence offered in support of shared decision-making and its benefits to patients, providers, and the health-care system.¹ Dr. Katz recently spoke with the The ASCO Post to elaborate. 

“We have seen an overexuberance regarding the bang for the buck, with regard to increasing the patient’s engagement in clinical encounters,” he said. “While greater patient engagement, in itself, has value—the enhancement of knowledge and improvement in patient satisfaction—whether this results in more evidence-based treatment decision-making  is the question mark.”

Does Shared Decision-Making Aim Too High?

The aim of shared decision-making, according to Dr. Katz, is to incorporate patient values and preferences into treatment decisions. He noted that shared decision-making—which strives for greater engagement of patients with their physicians—is being strongly promoted as an ethical responsibility, a way to facilitate understanding about treatment risks and benefits, and a means toward greater patient satisfaction.

But shared decision-making is also being touted as a strategy to reduce overtreatment and costs. The rationale is that better-informed patients will be more likely to choose more conservative treatments and avoid unnecessary ones.

“The increasing expectations about the role of [shared decision-making] in clinical and health policy warrant closer scrutiny of the evidence,” Dr. Katz wrote in the JAMA article. “Despite some well-documented benefits of [shared decision-making], the literature does not support its potential to reduce overtreatment and costs.”

Dr. Katz made several observations in support of his argument:

• Studies of shared decision-making do not clearly differentiate (“disentangle”) whether the effects of an intervention can be attributed to patient- or physician-level factors.
• There is inadequate appreciation of the complexity of how patients construct and express their preferences for treatment.
• It is assumed, with little evidence, that patient preferences would inherently favor less extensive treatment; to the contrary, some studies suggest patients have unrealistically high expectations about what treatments can offer them.
• There is an oversimplistic view of the clinical encounter, with blanket assumptions about which conditions or treatments are more or less sensitive to patient preferences.

Patient Engagement Will Not Reduce Costs

“In the age of cost-containment and concerns about overtreatment, we can’t assume that involving patients more in treatment decision-making will help solve these problems,” Dr. Katz said.

The concept of “cost-effectiveness” is generally applied at the system or patient population level, but patients in the exam room are not focused on cost-effectiveness; individual patients are not interested in the population, but themselves, he maintained.

“Patients are not looking to cut corners and minimize cost, unless they are held accountable.  Patients participate in overtreatment. The key issue is that patients are not good arbiters about the cost-effectiveness of their treatment,” he insisted. He suggested that the growing use of contralateral prophylactic mastectomy is an example of the influence of patient preferences on potential overtreatment in cancer. 

Dr. Katz and Monica Morrow, MD, a breast surgeon at Memorial Sloan-Kettering Cancer Center, New York, recently coauthored a “viewpoint” in JAMA that examined this issue.² They maintained that the substantial increase in contralateral prophylactic mastectomy (from 39 to 207 per 1,000 between 1989 and 2008) stems from a number of factors, including a sense of urgency in treatment planning, the belief that “bigger is better,” the overestimation of recurrence risk and benefit of prophylactic treatment, the influence of word of mouth and high-profile patients, and the use of more sensitive imaging techniques that reveal suspicious lesions.

But a strong determinant of the use of contralateral prophylactic mastectomy, he pointed out, is “the desire of patients to reduce the fear of recurrence, if not the actual likelihood.”

In fact, thanks to highly effective systemic therapies, the likelihood of a second primary breast cancer is exceedingly small, except in patients with BRCA mutations. It is only for this subset that contralateral prophylactic mastectomy is recommended.

Surgeons also contribute to this overtreatment for breast cancer, he said. They may be convinced that aggressive surgery will improve long-term quality of life (which cannot be proven), or they may acquiesce to patients’ desires. The availability of insurance coverage for contralateral prophylactic mastectomy regardless of risk reinforces the notion that the procedure is medically indicated in any patient, he added.

“The use of contralateral prophylactic mastectomy has been growing over 7 years, and many surgeons are becoming increasingly uncomfortable with removing the unaffected breast when this will have no effect on distant disease or death but may contribute to morbidity.  In an atmosphere of patient-centered care, refusing a patient request for contralateral prophylactic mastectomy is difficult,” Dr. Katz emphasized.

Call for Validation

“Ultimately, we ought to share decision-making, but the responsibility for cost-containment is in the hands of the doctors,” he said.  Thus, he added, ASCO is “spot on” in its Choosing Wisely campaign.  The focus should be on educating providers, addressing the system-level factors that drive overtreatment, and breaking down the system barriers that lead to undertreatment, according to Dr. Katz.

The breast cancer treatment context is an excellent model for evaluating the value of shared decision-making, since treatment planning and management are already highly interdisciplinary, and interdisciplinary care links well with shared decision-making.  “Breast cancer can be a model for proof of concept and implementation of shared decision-making,” he suggested.

“Shared decision-making is not yet a quality measure, but we are headed in that direction as patient-reported outcomes—the patient’s appraisal of care—is of growing importance,” he concluded. “But we are in the infancy of standards about what shared decision-making is or should be, and a lot can go wrong while we figure this out.” ■

Disclosure: Dr. Katz reported no potential conflicts of interest.

References

1. Katz SJ: The value of sharing treatment decision making with patients: Expecting too much? JAMA 310:1559-1560, 2013.

2. Katz SJ, Morrow M: Contralateral prophylactic mastectomy for breast cancer: Addressing peace of mind. JAMA 310:793-794, 2013.

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SIDEBAR: Shared Decisions: What Should We Expect?By Ronald Piana
December 15, 2013, Volume 4, Issue 20

There is growing interest by patients, policymakers, and clinicians in shared decision-making as a means to include patients in health decisions and translate patient evidence into clinical practice. Conceptually, sharing of information seems like a natural interplay between doctors and their patients. However, while studies indicate that most patients want more dialogue, many clinicians don’t feel adequately trained to implement shared decision-making in their oncology practice. At the recent ASCO Quality Care Symposium in San Diego, Steven J. Katz, MD, MPH, examined this important issue.

Show Me the Data

“There’s compelling evidence that’s been summarized in several editions of a Cochrane Review that addresses the impact of patient decision aids suggesting that sharing makes decisions more effective,” said Dr. Katz. “Patients are more informed and more deliberative. And although the evidence also suggests that patients are more satisfied, there is little evidence that shared decision-making changes behavior.”

Dr. Katz noted that over the past 3 years we’ve seen an additional rationale emerge in the literature for increasing shared decision-making. “Some have argued that incorporating patient preferences into treatment decision-making could reduce overtreatment and overall costs,” he said, pointing to recent commentaries and studies that suggest that informed patient choice via the use of decision aids may decrease the demand for invasive surgical procedures and reduce costs.

He enumerated three main limitations to the argument that more shared decision-making between patients and clinicians could reduce overtreatment and medical costs: The literature fails to distinguish clinician vs patient influences on treatment decisions, there is insufficient consideration of the complexity of how patients construct and express treatment preferences, and the studies project an oversimplistic view of the doctor/patient clinical encounter.

What Do Patients Value?

“Ultimately, the question is, what do patients value? There are really only three things. The first two are quantity of life and quality of life, as far as their physical, social, and emotional well-being. But the third value is something we as doctors under-recognize, and that is the treatment decision-making process itself, “ said Dr. Katz.

“When we’re in the exam room, there is an interplay between the three basics of making a decision: rational deliberation, intuition, and of course the clinical rules that guide physicians. For the patient, it is all new and pretty scary. There are a number of interdependent treatment options, and the evaluative information is very complex. This creates a challenging environment for shared decision-making, which is often done at a pressured pace,” he continued.

Dr. Katz concluded, “Shared decision-making improves the patients experience with the clinical encounter and makes decisions more effective—patients are more informed and more engaged. However, there is no compelling evidence that more shared decision-making with patients will reduce overtreatment and medical cost inflation. So this is a strong call for more research about the consequences of shared treatment decision-making between patients and their clinicians.” ■

Disclosure:Dr. Katz reported no potential conflicts of inte

Vr - this is the orenstein piece I refer to, about cpm, not the earlier one on the " feel-good war " you refer to 

http://www.nytimes.com/2014/07/27/opinion/sunday/t...

Also great letter to the editor excerpted below (more here:   http://nyti.ms/1leg2yw

To the Editor:

This article is another example of second-guessing and interference with the most personal of health decisions made by women. When a woman is given a diagnosis of cancer, the choices she makes about treatment are based on a number of risk assessments and subjective probabilities. But perhaps most important, those decisions are made so that the woman can find some peace of mind and move on with her life.

Any model of decision-making has two sets of inputs: probabilities of outcomes and preferences, goals or desires. Divergent choices can be made on the same factual basis expressed in the probabilities that a woman assigns to various outcomes.

The decision to have a mastectomy or a lumpectomy, or remove a seemingly healthy breast, should be a woman’s choice without others second-guessing that a wrong decision was made.

This article plays into the idea that intimate, difficult and emotional health decisions about breasts, ovaries, uteruses and vaginas are properly judged and discussed in public by anyone with a related experience or opinion. As with breast cancer, there is an array of treatment options, some controversial, for prostate cancer, yet articles judging the choices men make about that are a rarity.

NOREEN M. SUGRUE
Urbana, Ill., July 27, 2014

The writer is coordinator of health policy initiatives in the Women and Gender in Global Perspectives Program at the University of Illinois at 

Jessica..I'm quite aware of Orenstein's second article which you refer to.  The point that Orenstein makes in BOTH articles is that women are making their health decisions based more on emotions than data which is leading to over treatment.  Had physicians not been aware of this serious health dilemma, then medical ethicists would not have been studying this issue for the last dozen or so years.

I agree it is a complex issue that some of the writers you refer to point out.  However, I do not think that this should be looked at as a "feminist" issue.  If you read Dr. Brawley's book, you will realize this is a grave issue that affects all of us.  In his book he points to free prostrate screening that hospitals offer to position both men AND women to become "patients." He tells us that women will more often respond to making their family's doctor appointments, so prostate ads are aimed more at women than men!  Never mind that the current guidelines for prostate screening is as controversial as population based screening mammography!  Hospital bean counters and organizational psychologists and marketers know all of us better than we know ourselves.

If you want to position this issue of CPM as just a "feminist" issue, I think you and the other "feminist" writers are missing the larger issue at hand.  As Dr. Brawley's book is titled, "How We Do Harm," he rightly refers to "we.". We need to all understand that more does not necessarily mean better.  And once we accept that naked truth and start making our decisions based more on the data than our emotions, then we will all pave the way for better care.

Jessica...I haven't seen any comments made by Dr. Brawley with respect to Orenstein's latest article.  But here's what he said following her last article...Note in his first paragraph how he frames his response.  He tells us that not only should breast cancer patients read the article, BUT prostate and other cancer survivors too should read the article!

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“I used to believe a mammogram saved my life.” So begins a remarkable article in this Sunday’s New York Times Magazine (“Our Feel Good War on Breast Cancer“), which asks provocative questions about the battle against breast cancer, questioning awareness efforts and saying mammography has not been as effective at reducing mortality as claimed.

We asked Otis W. Brawley, M.D., the Society’s chief medical officer for his thoughts.

“This is a powerful and important article, one I believe every breast cancer advocate, and frankly even advocates for prostate and other cancers, should read. It lays out the challenge that lies before us in reducing death and suffering from breast cancer, while demonstrating the challenge that we in public health face in how to accurately and truthfully administer information...."

http://acspressroom.wordpress.com/2013/04/26/nytmag2013/

IWANNACOOKIE: please let us know what happened when you spoke to surgeon. I too am sorry about the scheduler and sorry for hijacking and sounding off here re cpm and one of my pet peeves.

I think it's just awful, a special breed of awful, when medical support people butt in to patients' business, speak out of turn and without any sense of empathy or care. It's rude and wrong period, and then just terrible when you consider patients (or their caregivers) are in emotionally vulnerable states.

It is not reserved to your hospital. A family member was making arrangements for partner to get a second opinion  with a sought after west coast oncologist. And the person who answers the phone, the scheduler for these oncologists, started arguing with my family member over who they wanted to make an appt with! My family member was happy to wait until the next opening - 1 or 2 months off - with Doctor X but the scheduler kept insisting that they should see someone else who was open sooner, Doctor Y.  It was almost to the point of bullying. My family member called me up weeping, that they had to hold their ground so strongly to simply request to wait months to see a doctor. Well why do you want to see Dr. X, and what's wrong with Dr Y, the scheduler kept asking and on and on. UNBELIEVABLE.

These people have no business working where they work if you ask me.  Be strong and don't sweat the small stuff like these nobodies in the way of your treatment.  They are just in the way.  Move past them.  Good luck with everything.

jessica...iwannacookie is posting on a reconstruction thread. Seems like she has been in touch with a plastic surgeon and is moving forward.

One thing I don't understand is why MX and BMX are constantly referred to as "overtreatment" when MX is statistically equal to lumpectomy + rads.  Is it called overtreatment because it's a more involved surgery?  What about the woman who desperately wants to keep her breast so she's willing to go in for multiple surgeries to achieve clean margins?  Then she goes through multiple procedures to try to restore cosmesis to her scarred and radiated breast.  Then has cosmetic work to try to attain symmetry with the native breast (which I'm not sure is covered by law the way procedures to attain symmetry after a MX are, but correct me if I'm wrong). I have no idea how often that kind of situation happens, but just like women might underestimate how difficult the recovery can be from MX/BMX with or without recon, no one should think LX is a guarantee of an easier path.  Radiation has risks too, not to mention it is daily for many weeks.  Of course, choosing MX doesn't mean that you won't need rads, but you will for sure if you choose LX.  In no way am I trying to say that MX is superior to LX - as stated over and over again, at the population level, both procedures are equal in terms of survival.  But to say that only women who are BRCA + should have CPM, I call BS!  What about the other genetic syndromes that we are slowly learning about (Cowden's, lynch, Li Fraumeni, HDGC, etc)?  What about women who have a strong family history (validated by a licensed genetic counselor) or a personal history that appears to put them at risk (I say "appears" because ere simply aren't statistics out there to cover all of these situations)?  What about the women whose tumors didn't show up on standard imaging?  If anyone knows of studies comparing LX to MX for women who had palpable or symptomatic lesions that were radiographically invisible, I'd be interested to see them.  What about women who've already had multiple biopsies in the "healthy" side over the years?  How can someone say that MX is "the wrong approach"?  How can someone say LX is the wrong approach?  

interesting discussion

Id like to add that the type of cancer can come in to play as well. When I asked my BS if i had a  local reccurence with a LX and being her2 positive would i have to do chemo  again he replyed "probably yes"  that helped me make my decision. Also being her2 if you have a new primary you're in for chemo again unless they find it when its under 5mm which is luck of the draw since its such a fast growing cancer and can show up in between screenings

What about age? I was diagnosed at 42. Havent even entered my "high risk" years yet, so i have a much longer time to develop a new primary

I know for me, if i was older and not her2 the choice would have been lx. 

Rozem I absolutely agree that age factors in here. Many times age factors in and it's just one of those things that isn't always apparent from various posters, how old they are and how old they were with their bc diagnosis.  I think it can have a great impact on how you see risk and foresee quality of life and affordability etc going forward.   Also one who is 60 or older when diagnosed can take more comfort in statistical numbers since they basically go for 10 yrs, or sometimes 20. Anyone under 50 when diagnosed (just to pick a rough estimate) certainly is looking at a longer horizon (hopefully) than 20 yrs…not to mention as you say the many many years of screening ahead of them and time to develop new equally or more aggressive breast cancers…I'm sorry your bmx flap surgery was the worst ever. Hope you are ok now. I did the easiest surgery/least risky/most conservative. Implants. so far so good.