If you have gone flat after mastectomy, please consider participating in this short, anonymized survey. It’s an opportunity to contribute to ending flat denial that’s quick and easy. We want to hear from ALL women who decided to go flat… whether your result was great, unacceptable, or somewhere in between! At the end of the survey, there is room for open-ended comments about your experience.
The purpose of this survey is to gather important data on when, where, and how flat denial does (and does not) happen. The survey will have run from July 2018 to January 2019. It’s not a scientific sample, but our hope is that having this data to present to researchers will spark their interest in flat denial and eventually lead to a scientific study that will provide a reliable framework for professionals to use to address flat denial effectively.
The way we anonymize the survey data is by using a “participant code” that is assigned to each participant. (Information is linked to the participant code rather than to participant’s name or other identifying information.) You can request that code here.
Not Putting on a Shirt will be publishing a report on our findings in mid-February. Stay tuned!
Editor: For women who initially chose implant reconstruction, and are dissatisfied with their implant experience (there are multiple reasons this may happen – pain, infection, capsular contracture, skin healing issues, implant migration, etc.), the next step is to remove the implants. This procedure is called “explant.”
After explant, there will almost always be significant excess skin remaining, and if the surgeon does not remove it, the patient is left looking “deflated” which for most women is an absolutely unacceptable result. Removing the excess skin takes time and skill. Suzie’s plastic surgeon made no attempt to remove any of her excess skin during the explant surgery, despite Suzie being explicitly clear about wanting to have all excess skin removed and stay flat. She was rightly enraged, and demanded that he fix it – here, she tells her story of persistence and finally getting a good flat result that she can live with.
In September 2017, I had a double mastectomy and everything happened so fast. I was coerced into reconstruction and just went with it. My primary concern was having my cancer surgically removed. I had had a lumpectomy in the same breast 5 years previous and being small-breasted, I thought there was no salvaging the breast and opted for mastectomy. I then decided on a double for two reasons: I wanted symmetry, and I didn’t want to find cancer at some later time if I kept the healthy breast [Ed. the risk of new primary breast cancer in the remaining breast is at least doubled once a woman has had her first breast cancer diagnosis, relative to the general population.]
Expanders were removed and replaced with implants two months later. I hated them immediately! I felt WORSE with implants than with the “iron bra” feeling of the expanders. My husband encouraged me to give it time so I did – eight months’ worth of time. I was in constant pain, could never ever sleep on my stomach, couldn’t swim, etc.
To me, these fake-ass breasts weren’t worth such sacrifices!
So, in July of 2018, I explanted. Afterward, I had excess skin left even after I had told him at my pre-operative appointment that I want a FLAT, SMOOTH, TIGHT and TIDY result! He advised me at the pre-op that if he did what I was asking, it would extend my scars out [Ed. to produce a flat contour, oftentimes the scar does need to be extended somewhat further under the arm]. My response was I was totally fine with that! CLEARLY that meant nothing!!
So, after getting more education on the subject, I realized I needed to make noise – a lot of noise – to get what I had asked for! Well, just so happened that noise was produced by me in a scathing email to my nurse navigator, who quickly shared it with my plastic surgeon. The very next morning they called me to set up another appointment! The following week I went in, and the surgery was scheduled for the following month.
This time, my plastic surgeon did exactly what I asked for. My scars only extend out to where the drains were, but I got a beautiful FLAT and NEAT result! I couldn’t be more pleased. Yes, it’s a shame it wasn’t a once and done deal, but one more surgery was so worth it. And on the plus side, no drains were needed for this revision! I think the final result speaks for itself!
My message to other women who were left with excess skin is: You do NOT have to settle and just “live with it”!
Just before the holiday, the BBC published an article featuring a UK man, Peter Bagnall, who was diagnosed with breast cancer and was denied surgery to produce a symmetric aesthetic result, causing him immense emotional distress. Men represent less than 1% of all breast cancer diagnoses, but that number represents thousands of men every year in the US alone. Although they may not talk about their aesthetic result as much as women do, men’s experience matters. The parallels of Peter’s experience with those of the female flat denial survivors featured here on NPoaS are striking.
“After I had a mastectomy, I felt terrible looking in the mirror. I always thought I didn’t have a body image problem as a man, but I felt lopsided… I was not offered the chance to go flat or reconstruction. I spoke to them about it, but it came across that they thought I was weird for wanting another mastectomy. I just wanted both sides to be the same.” – Peter
Peter had to undergo psychiatric testing in order to get his second mastectomy to produce a result he could live with – patients have had similar experiences in the US, but thankfully it is no longer the standard of care (further discussion here). He was also suffering from the loss of his wife from metastatic breast cancer during this time – unimaginable.
After Peter’s second mastectomy, a nurse at his treatment center brought up the idea of having nipple tattoos. These tattoos have become more popular in recent years for female patients.
“Men show nipples more than women do. I was not able to swim for years and years without keeping my top on and I lost the enjoyment of swimming I used to have. Now when I swim, I feel a lot more confident.” – Peter
The bottom line is that no matter one’s gender identity, having a cosmetic result that the patient can live with following mastectomy is critically important for their quality of life.
Word continues to spread among the surgical community that patients going flat after mastectomy expect their choice to be given the care and consideration it deserves – the same level that is afforded to the choice to reconstruct. Patients going flat expect a high-quality flat closure in one surgery whenever possible.
Article on Flat Denial Published in Clinical Oncology News, December 2018
Catherine Guthrie‘s scathing exposé of flat denial in September 2018 confronted surgeons with the reality of what many patients have been subjected to, and how serious the negative impact on their quality of life has been as a result of their choice being devalued, disregarded, or overridden. The article made clear that action was required on their part to address the problem.
Earlier this year, an article in Cosmopolitan magazine suggested surgeons leave excess skin behind just in case patients change their minds about reconstruction, despite their patients’ decisions to go flat. Accompanying photos document the poor cosmetic outcome…
“Those photographs are all real, but the reason excess skin was present was due to the surgeon not repairing the dog ears that naturally occur with a simple mastectomy,” said Juliann Reiland, MD, a surgeon with the Avera Medical Group in Sioux Falls, S.D. “This is a common problem among most all surgeons, and it is very distressing to the patient.” [our bold]
Not Putting on a Shirt would like to thank Dr. Reiland for explicitly acknowledging the distress that a poor cosmetic result causes the patient. This is a big step forward. Women have been suffering in silence for far too long. Another surgical oncologist and professor of surgery, Dr. Julie Margenthaler, then describes several surgical techniques that can be used at the time of the mastectomy to produce a better quality flat closure (illustrations included from the article):
There are some techniques that surgeons can use to get patients close to what they want with the initial procedure. One of the most common is the V-Y plasty, a hockey stick–shaped incision that most general surgeons learn in general training, Dr. Margenthaler said. “It takes a bit more time, but it can address some of those issues.”
… Instead of going straight across the chest, the V-Y plasty runs straight and curves up, eliminating most, if not all, of the pucker of skin that would otherwise be a dog ear… Other approaches include the M-plasty and the angel wing.
A Huge Step Forward: Developing Educational Courses and Videos on Flat Closure Techniques
The article goes on to say that Guthrie’s exposé has prompted much discussion among breast surgeons. Patients are reportedly coming into their surgical consults well prepared, knowing about flat denial, and advocating for themselves and their choice to go flat. Mission accomplished! Just a reminder: patients can use our brochure to help them advocate for a good flat result.
The [Cosmopolitan] article prompted a conference call among members of the American Society of Breast Surgeons (ASBrS), some of whom reported several patients in their office demanding perfect mastectomies, unlike the ones depicted in the article.
“Demanding perfect mastectomies” is perhaps an exaggeration and an understandable response to patient advocacy. Women now know about flat denial… and want to avoid it!
The article goes on to state that the American Society of Breast Surgeons (ASBrS) is developing educational courses on techniques to help surgeons achieve better outcomes in breast surgery, as well as a series of online videos that will show surgeons step-by-step how to repair defects (dog ears, etc.). The “priority video list” on the ASBrS 20th (May 2019) Annual Meeting agenda includes “MEDIAL AND LATERAL Dog-ear repair techniques.”
The ASBrS’s oncoplastic committee is developing courses on techniques to help surgeons achieve better outcomes in breast surgery; they’re also working on a series of online videos that will show surgeons step-by-step how to repair these defects. Dr. Reiland encouraged general surgeons to learn from colleagues who perform a high volume of mastectomies. She also urged them to be up front with patients about why their initial outcomes might be less than optimal.
This is a huge step forward. Training general surgeons in flat closure techniques will be critical in ensuring that women receive results they can live with following mastectomy. It’s in our mission statement at Not Putting on a Shirt. And it’s in the mission statement at our sister advocacy organization Flat Closure NOW as well.
One thing that was not mentioned in the article as a way to address the lack of skillset among general surgeons, is the prospect of bringing on a plastic surgeon to perform a high-quality flat closure. Plastic surgeons already have the skillset. There are barriers to this in some cases. However, as a tool in the arsenal, it’s important to keep in mind.
In terms of expected outcomes and communicating realistic expectations to patients – this is critical. Patients who are obese or have very large breasts do indeed present more of a technical challenge than thin, small breasted patients, in achieving a truly flat contour. If these challenges are present, they should be addressed clearly, honestly, and effectively, so the patient can make informed decisions.
“We need to respect her wishes”
Normally when a plastic surgeon agrees to perform a flat closure, the result will be high-quality. In NPoaS founder Kim Bowles’ case, her plastic surgeon intentionally failed to repair her dog ears, leaving the excess tissue behind to facilitate future reconstruction “in case you change your mind.” But this is a highly unusual situation. Most instances of flat denial do not involve a plastic surgeon at all.
Dr. Reiland goes on to address intentional flat denial:
“It really bothered me that surgeons in the Cosmopolitan article said they left the extra skin in case the patient changes her mind about reconstruction. If the patient states she wants to be flat, we need to respect her wishes and do the best we can to achieve that in the first operation. Regardless of whether a woman voices a desire to be flat, we should all do our best to employ the surgical techniques required to remove the excess skin medially and laterally* to give our patients the best results.” – Dr. Juliann Reiland (our bold)
*medially = on the front of the chest; laterally = at the sides (under the arms)
Most surgeons are ethical individuals who acknowledge the limitations of their skillset. That’s why flat denial has gone under the radar for so long… it doesn’t happen often enough to produce an obvious pattern. And of course, women have been ashamed to talk about it. But flat denial is not under the radar anymore, thanks to the brave women who have come forward with their stories, and to the brave surgeons who have spoken out in support of these women.
Thank you, Dr. Reiland, for being a voice for women!
Thank you to the American Society of Breast Surgeons, especially their esteemed oncoplastic committee members, for taking action to improve outcomes for patients going flat!
And thanks to Clinical Oncology News for publishing this important article.
Change is happening. Together, we are putting an end to flat denial.
We would like to clear up any confusion about what flat denial is, and what it is not. We want to directly address the conflation of minor cosmetic defects with the egregious results that constitute flat denial, as well as the conflation of women who were on the fence about reconstruction with those who made an affirmative choice to go flat.
Flat Denial Happens Without the Patient’s Consent
Flat denial is when the unilateral actions of a surgeon leave their patient with an unacceptable mastectomy result.
The key word here is unilateral.
When a patient affirmatively decides to go flat after mastectomy, expects a flat result, and then wakes up to a not-flat result, they experience this as a violation of their consent and as a loss of bodily integrity. The unacceptable result was created without their consent or participation.
We cannot fall for the no true Scotsman fallacy on this important issue. There are certainly going to be situations where there was a legitimate misunderstanding between the patient and the surgeon – whether that’s due to unclear communication, general misalignment of expectations, or some other benign reason. To be clear, even in these cases, the onus is on the surgeon to ensure that the patient is informed of the expected outcome.There will also be situations where the patient was truly undecided at the time of surgery, and ends up unhappy with their cosmetic result after the fact, or is unhappy with it for other reasons.
The cases of flat denial that Not Putting on a Shirt has published, do not fit this description. In every one of the cases we have published, the unacceptable result was produced in one of two ways:
Through truly negligent behavior on the part of the surgeon. These surgeons either lacked the skill to create a flat contour and did not acknowledge their skill deficit, or they may have had the technical skill but simply did not want to expend the time or effort required to produce the result the patient agreed to.
Intentionally through paternalism, by a surgeon who thought they knew better than the patient and decided, despite having the technical skill to create a flat contour, to substitute their own surgical decision for that of the patient and “leave a little extra in case you change your mind.”
The distinction between a true misunderstanding prior to surgery, and negligence or intentional disregard, seems to be easily obscured when images are not used to illustrate the problem. This is why at Not Putting on a Shirt, we routinely use images that may be shocking to some viewers, but that represent the reality that victims of flat denial are left to live with. This is why in our informational brochure, patients with similar body types whose wishes were respected, and whose wishes were not respected, are placed side by side so that the stark contrast between their results is undeniable.
Patients Experience Flat Denial as Malice
It would be easier in some ways, to believe that the victims of flat denial are somehow misrepresenting their experience. Accepting the reality is a hard pill to swallow. For patients, it is hard to accept that a medical professional would treat them with disregard or even malice. And for surgeons, on the other side, it is hard to accept that some of their cohort would treat a patient this way.
The unavoidable fact is that there are surgeons practicing now, who are willing to behave in this manner, and inflict these unacceptable results upon some of their most vulnerable patients – who in almost all cases are cancer patients, and in all cases are facing the amputation of their breasts.
Is flat denial malicious? Our answer is that patients experience it as malicious. The specifics depend on the type of flat denial they experienced:
IntentionalDisregard. When the motive is paternalism – the surgeon believes the patient will change their mind and acts accordingly directly against the patient’s consent – and the flat denial is intentional, this denies the humanity and agency of the patient by definition. This is a superseding of the surgeon’s will, over that of the patient.
Negligent Disregard. If the unacceptable result is produced by either lack of technical skill or lack of care or willingness to spend the time and effort required to produce a good result… this also denies the humanity and agency of the patient, by devaluing the patient’s clearly stated priority to have a smooth flat result.
If a surgeon cannot or will not produce a result that falls within the boundaries of acceptability for the patient, it is their duty to communicate this clearly to the patient so that she can make an informed choice about her surgical care. Typically this will mean either bringing on a plastic surgeon to the team to fill the skill deficit or referring the patient to a colleague who either has the technical skill or is themselves willing to bring on a plastic surgeon.
There can be no allowance made for paternalism in medicine. There can be no excusing the misleading of a patient about their expected result, whether by affirmative statements or by omission.
Priorities and Being“One and Done”
Flat denial cannot be understood without highlighting the importance to most patients who choose to go flat, of being “one and done.” To a surgeon who sees hundreds of patients a year and is accustomed to seeing those patients lying on their operating table, revision surgery to repair an unacceptable mastectomy result may not seem to be “a big deal.”
But it is a big deal to the patients.
It is a big deal to the patients, for many reasons. These reasons can be highly personal and variable, but there are some common themes.
The population of patients that has chosen affirmatively to go flat, have different priorities from the population that chooses to reconstruct. Their valuation of the avoidance of unnecessary surgical risk, and of a quick recovery time, is relatively high. Many patients who choose to go flat simply have no interest in having reconstructed breast mounds, but there are also those who might consider reconstruction at a later date if their priorities change – and so affirmatively choose to go flat at the time of the mastectomy.
These are not patients who are on the fence.
These are patients who affirmatively decided to go flat, communicated that to their surgeon, and understood that there was mutual agreement on the expected outcome… and then woke up to another outcome entirely. This is flat denial: choosing to go flat, and then having that choice taken away from you.
The Two-Axis Spectrum of Skill and Regard
Flat denial is also not a matter of unavoidable minor cosmetic defects. Again, the no true Scotsman fallacy comes into play here. Yes, there will always be some patients who are unsatisfied with their cosmetic result despite the best efforts of a skilled surgeon or team of surgeons producing the best result they can in good faith. These are not the patients who stories we share here at Not Putting on a Shirt, and whose experiences we label “flat denial.”
Patients who have been subjected to flat denial have egregiously poor cosmetic results that were truly avoidable:
Negligent flat denial typically yields poor quality closures with folds, puckers, unevenness and pronounced asymmetry.
Intentional flat denial typically yields high-quality, smooth incisions devoid of folds and puckers, and carefully achieved symmetry, but with varying amounts of excess skin, some of which rise to the level of a “skin-sparing” procedure.
In this framework, the degree to which the cosmetic result is poor and avoidable exist on a two axis spectrum, the axes being (x) “skill” – technical competence in flat closure, and (y) “regard” – respect for the patients wishes:
Counterclockwise: Bottom left – negligent flat denial. Bottom right – intentional flat denial. Top right – good flat result. Top left – minor defects, referred patient, and bringing on a plastic surgeon
What Is The Solution?
In order to bring the patients on the bottom of the chart up to the top right, in one surgery – which, again, is highly valued amongst patients going flat and is one of the factors driving their decision in the first place – both regard and skill must be corrected.
Skill. Because flat mastectomy closure techniques are not routinely taught in medical school right now, general and breast surgeons often must seek out additional training if they are to acquire the skillset required to produce good flat results for their patients. Alternatively, they can bring on a plastic surgeon – who already has the skillset – for the closure. There are barriers to both of these solutions, which Not Putting on a Shirt is working on addressing in collaboration with other patient advocates and medical professionals. Stay tuned!
Regard. This is a more deeply rooted, cultural problem. Why do some surgeons lack regard for the wishes of their patients who choose to go flat? Most surgeons don’t lack regard for their patients who choose reconstruction. What’s the difference? Clearly, sexism is part of the answer – the historical, paternalistic notion that women need to appear to have breasts in order to feel or be “whole” continues to dog the women of today. The notion that women going flat will “change our minds” is also rooted in paternalism.
One of the best ways to address the regard aspect of flat denial, is the flat advocacy movement that we have seen develop over the last decade or so. Early pioneers like Melanie Testa started baring their flat chests publicly and proclaiming to the world that flat is a valid, healthy, and beautiful choice. In 2014, Flat and Fabulous picked up the banner. And the work continues today with organizations like Flat in Canada , Flat Friends UK, The Flat Advocate, and of course, FlatClosureNOW.Publicly and happily living flat is starting to lose its stigma thanks to the tireless work of advocates like these. But clearly, we still have a long ways to go.
Not Putting on a Shirt is committed to putting an end to flat denial.
