There is little to no data in the existing body of scientific literature that specifically addresses the quality of life of patients going flat and how their satisfaction with their cosmetic result affects this. Patients going flat need and deserve the same consideration as do patients who reconstruct, and we need evidence-based surgical management to achieve this parity.
The purpose of NPoaS’ 2018 Survey was to gather preliminary data on patient satisfaction with flat mastectomy closure cosmesis, to present to researchers to encourage their interest and eventually lead to a larger scale scientific study using validated tools.
Summary of Findings
Satisfaction scale (1 = completely dissatisfied with cosmetic result, 10 = result was perfect)
● No change in satisfaction over time was observed for patients who did not have revision surgery. A majority of respondents (3/4) were satisfied (rating = 6-10) with their initial result.
● We observed a low incidence (less than 25%) of revision surgery for dissatisfied patients (rating = 1-4).
● Revision surgery drastically improved satisfaction, from a mean of 2 before, to a mean of 9 after.
● We observed an incidence of intentional flat denial of 5% (n=8) of all respondents, and among the dissatisfied respondents (satisfaction <5) the incidence was close to one in five (19%).
● We observed no relationship between facility type (community hospital, regional hospital, academic center) and satisfaction.
● Geographic region may have some relationship to satisfaction.
For more details on these findings, download the full report here.
Stay Tuned for Our Follow-Up Questionnaire
Not Putting on a Shirt has drafted a follow-up questionnaire which will tell us more about factors contributing to patient satisfaction with flat closure cosmesis in this population. This questionnaire will gather more detailed data on respondent demographics, body habitus, surgical circumstances, cosmetic result specifics, and surgical experience generally. Stay tuned!
Confronting Your Surgeon After Flat Denial: A Personal Choice
Preface by NPoaS Founder, Kim Bowles
If you have been a victim of flat denial, I wrote this for you. Before we delve into the issue of confronting your surgeon, I want to make sure that you hear this:
You’re not alone;
This is not your fault;
It can be fixed; and
I will not stop fighting for you, and all other victims, until flat denial is a thing of the past.
It’s undeniable that flat denial is a serious trauma. And while each victim’s situation and response are unique, there are some common themes. My hope is that you will come away from reading this discussion feeling that your experience and feelings are valid, and with a stronger sense of what the right course is for YOU to pursue moving forward with your healing process.
The Experience of Flat Denial
First, what is flat denial?
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
It’s when a mastectomy patients’ wishes to have a smooth flat chest after their surgery are denied by the unilateral actions of their surgeon(s), either intentionally despite technical competence (“I’ll just leave a little extra in case you change your mind”), or by default through incompetence. These results are not minor imperfections; they are truly egregious in quality. And, critically, they are avoidable with proper skill and care.
When you, as a patient, affirmatively decide to go flat after mastectomy, and communicate this clearly to your surgeon, you expect to wake up to a flat result. You have made peace with your reconstructive decision and come to accept that you will wake up without breasts.
When you instead discover, with shock and dismay, an egregiously poor cosmetic result that is in no way flat, you experience this as a violation of your consent and as a loss of bodily integrity. This is not a personal failing or weakness. It is a normal response to a trauma in which you did not have control over your body and could not protect yourself from battery (touching without consent).
Victim’s Responses
Some victims of flat denial choose to deal with this shock and dismay by trying to move on with their lives and accept, or even forget, what happened to them.
Many if not most victims simply don’t comprehend the reality of the violation, because the surgeons who inflict flat denial routinely gaslight their victims and convince them to disbelieve what they see with their own eyes (“I didn’t leave extra… it’ll tighten up,” etc.) And until very recently, no one spoke openly about it and when it was mentioned, it was not affirmed as a traumatic event. Sentiments like “just be grateful you’re alive,” “it’s not that bad,” “you’ll get used to it,” and the like serve only to gaslight the victim even further.
Many victims decide to pursue revision surgery in order to repair the damage that was done to them.
And some victims decide to fight back.
Fighting back can take many forms, including filing formal complaints, pursuing legal action, protesting privately or publicly, or becoming an advocate. Perhaps the most common way of fighting back is to confront your surgeon directly.
Making the call to confront your surgeon
NOTE: If you have retained an attorney to pursue legal action regarding your surgical experience, please follow their instructions carefully in all related matters. Confrontation may not be advisable in your specific legal situation.
The choice to confront the surgeon who inflicted flat denial upon you, is a highly personal one. Don’t feel obligated to do so for any reason – put your own physical and
emotional health first. Flat denial is a traumatic experience and while there are aspects of healing from the trauma that all victims share, no two victims have exactly the same values and priorities. Your first duty is to yourself – to heal from this trauma as best you can.
As with any major decision, it can help to think about the pros and the cons of confronting your surgeon. Let’s be conservative and start with the cons. Reasons Not to Confront Your Surgeon You should know that most victims of flat denial do not confront their surgeons. There are many reasons for this:
Some patients fear that confrontation may compromise their medical care via retaliation from the surgeon, hospital, or medical community at large. Even if you have retained another surgeon for your surgical care, addressing flat denial socially and legally is largely uncharted territory and your decisions must be carefully evaluated in light of your specific circumstances.
Many victims don’t understand what happened to them and may have internalized blame and shame. After flat denial its routine for the surgeon to gaslight their victims, and until recently there was no one discussing the problem publicly to counteract this.
Until recently there was no clear language available to victims to articulate their experience. How do you confront your abuser if you can’t name the abuse as such? Some surgeons will say they “did you a favor,” or were “able to leave you some cleavage,” as though you should be grateful for their violation of your consent. That is emotional abuse, piled on top of the initial physical abuse of your body.
Confrontation is a highly stressful and therefore unpleasant prospect for many victims. Victims can reasonably anticipate negative reactions from their surgeons when faced with an accusation of flat denial. Since confrontation is not required in order to proceed with revision surgery at another surgical practice, the stress may not be worth the emotional cost – and many victims choose to move forward without confrontation.
Reasons to Confront Your Surgeon Bear in mind that while confrontation has potential emotional risks, it may also have emotional benefits. How you come away from the confrontational interaction will depend on many factors – your level of comfort with conflict, your social support system, your personal physical and emotional reserves, and the surgeon’s response to the confrontation – to name a few. What are some reasons patients choose to confront their surgeon?
To achieve a sense of closure
To fulfill a sense of moral obligation to ensure the surgeon is fully aware of the consequences of their actions
Because they don’t want to pursue legal action but do desire some kind of acknowledgment of their experience
Consider Whether Your Flat Denial Was Negligent or Intentional Whether your surgeon inflicted flat denial upon you intentionally or through negligence is also an important consideration when making the decision to confront:
Negligence. A surgeon who lacked technical skill and didn’t fully inform you of this fact prior to surgery is probably more likely to respond positively to confrontation, than a surgeon whose actions were intentional. Since flat denial has been a taboo subject until very recently, you may very well be the first of your surgeon’s patients to bring your dissatisfaction to their attention. They may be appreciative of your efforts to enlighten them, and the confrontation may materially change the way they treat mastectomy patients in the future. That’s the best possible outcome. Intentional Disregard. A surgeon who had the technical skill to create a smooth flat contour but chose instead to “leave a little extra in case you change your mind” intentionally and against your clear directive, will likely be less receptive to your message than a surgeon who was negligent. These surgeons have crossed an ethical line further into the red zone than negligent surgeons and have likely rationalized their actions. Confronting such an individual with the reality of their severe moral and professional failure may provoke a strong negative reaction.
Consider the Possible Outcomes
When faced with an anxiety-provoking decision, it can help to try to imagine what possible outcomes might look like, both positive and negative, to take away some of the fear of the unknown.
Negative Outcomes. What are some of the worst things that could happen? That depends on who is asking the question but some possible scenarios include:
the surgeon not responding at all and leaving the room to avoid facing you
your being asked to leave the hospital either by the surgeon or by hospital staff
the surgeon denying what happened or using other techniques to invalidate your experience
the surgeon blaming you – your actions or your physical attributes (age, weight, size of breasts) – for your cosmetic outcome
the surgeon using abusive language
Positive Outcomes. What are some of the best things that could happen?
your feeling a sense of closure or relief
the surgeon genuinely apologizing
the surgeon’s regret leading to improvement in their treatment of future mastectomy patients (by seeking additional training in flat closure, bringing on a plastic surgeon for their patients going flat, or appropriately referring these patients to a competent colleague)
Proceeding With Confrontation
If you feel that part of your personal healing process may involve confronting the surgeon – directly addressing the surgeon, naming the trauma they inflicted, and sharing your sentiments – there are two ways to go about this. You can confront them in person, you can confront them in writing.
Confrontation in person will mean scheduling an appointment with the surgeon. Prepare for your visit by:
writing out what you plan to say;
practicing how you will address various responses the surgeon may have to your message;
bringing a trusted support person with you who can provide emotional and/or informational support during the confrontation – they should commit to maintaining a calm demeanor during the visit;
if you are considering recording your discussion, keep in mind that the legality of this option varies by region and exercise due diligence
Confrontation in writing allows you to avoid real-time interaction with the surgeon, both positive
and negative. You can request that it be included in your medical record. No support person is required.
Things to Keep in Mind for Your Confrontation
It’s up to you to define your personal experience of flat denial – what happened, what it meant to you, how it affected you. The following general principles may also be helpful.
Informed consent was not obtained. Your surgeon is a medical professional and as such they are responsible for obtaining informed consent before operating. The fact is that they failed to inform you of the expected outcome of your surgery – therefore, they failed to obtain informed consent. The onus is on the surgeon, not the patient, to ensure that informed consent is obtained.
This decision belonged to you. The surgeon may indeed have experienced past patients changing their mind about reconstruction after initially choosing to go flat… but that does not excuse disregarding a patient’s clear directive. No person can predict the future with 100% certainty, and that’s not a reasonable expectation to have of any person, including patients facing mastectomy.
Flat denial harms patients medically. Revision surgery on an area that has local lymphatic system disruption can reasonably be considered a risk for lymphedema. Operating on irradiated tissue can lead to wound healing complications. There are risks associated with general anesthesia, which may be required for revision surgery. And every additional surgery increases the cumulative risk of infection and other complications.
Flat denial harms patients financially. Additional surgery can be costly for the patient financially as well. Deductibles, time off of work, travel expenses, etc.
Flat denial harms patients emotionally. Victims can experience everything from minor distress to PTSD. Flat denial is a serious trauma.
The harms of flat denial are avoidable.
Moral degradation. Some of the same attributes that lead a person to join the surgical profession – high intelligence and self confidence, ability to (hopefully reversibly) objectify their patients in order to successfully operate – may leave them vulnerable to moral degradation over time. Most surgeons consider themselves to be highly ethical, and most start out that way.
Oncoplastic training is available. Training is available for breast and general surgeons in oncoplastic breast surgery techniques – flat closure after mastectomy falls under this category – through the American Society of Breast Surgeons and elsewhere.
Conclusion
The choice to confront your surgeon is a highly personal one. Flat denial is a traumatic experience and your first duty is to yourself. Put your well-being first. Fighting back can take other forms if you feel you want to fight back but aren’t ready for or don’t want to pursue confrontation.
My hope is that by reading through this discussion, you have felt some validation of your experience and your feelings. And I hope that it helps you to decide what the right course of action is for YOU to pursue moving forward with your healing process.
Reconstructing a normal anatomic chest contour post-mastectomy using a new plastic surgery technique without implants or distant tissue donor sites
As patient demand grows for high quality, aesthetically pleasing flat mastectomy closures, cutting edge surgical techniques will be part of the conversation. Today we discuss a new technique called the “Goldilocks mastectomy,” or SWIM. This option, while not currently available to most patients, focuses specifically on maximizing cosmesis for patients having mastectomies without traditional reconstruction.
It’s important to note that because this is a new procedure, there is no long term data on its safety from an oncology perspective. The surgeons who offer it say that its risks are similar to that of a skin-sparing mastectomy. We look forward to seeing data on this.
Why Not Use Traditional Breast Reconstruction?
Traditional breast reconstruction involves additional risk beyond simple mastectomy and can impair function. Patients who reject traditional breast reconstruction are often motivated by wanting to preserve form and function for the rest of their bodies.
FIGURE 1 Traditional breast mound reconstruction (LD) – back muscle (latissimus dorsi) flap separation (SOURCE: M.D. Anderson)
FIGURE 2 Traditional breast mound reconstruction (TRAM) – abdominal flap separation (SOURCE: M.D. Anderson)
FIGURE 3 Traditional breast mound reconstruction – breast implant placement with pectoral muscle detachment (“release”). (SOURCE: Parker Center for Plastic Surgery)
Rejection of autologous flap reconstruction, for example, avoids a second surgical wound that may compromise recovery time and/or function – especially in the case of muscle tissue transfer, i.e., LD (Figure 1) and TRAM flaps (Figure 2). Rejection of submuscular implant reconstruction avoids damage to the pectoral muscle that can impair function (this muscle is partially detached from the ribs to accommodate the device) (Figure 3).
These patients are also motivated by minimizing their exposure to additional surgeries beyond the original mastectomy, and traditional reconstruction almost always involves multiple surgeries.
Flat IS Reconstructive – Not Cosmetic
ALL patients care about their cosmetic result. But cosmesis for patients going flat has historically been devalued or outright ignored. A common misconception about these patients is that they “don’t care about how their body looks.” This notion is rooted in historical sexism and sexual objectification of the female body.
The truth is that these patients have made an affirmative, informed decision. They have weighed their options and are simply not willing to shoulder the risk burden presented by traditional breast reconstruction in order to achieve an artificial breast mound. So, they proceed with the default reconstructive option: no reconstruction, or going flat.
In terms of cosmesis, patients going flat report desiring a smooth, flat (not concave) result with the original breast contour removed to the greatest extent possible. The ideal resulting contour would approximate that of the prepubescent female chest – a reconstruction of a normal anatomical structure that falls squarely into “reconstructive surgery” territory… not cosmetic.
Figure 4 Mastectomy patients who asked for a flat result
Unfortunately, many patients going flat are left with results that are nowhere near smooth or flat – concavity (which is largely unavoidable with traditional techniques), lumps, sagging excess skin (“in case you change your mind” about implant reconstruction (Figure 6)), redundant fatty tissue, dog ears, wrinkled/puckered incisions, and asymmetry (Figure 4).
It seems that until very recently, no one has thought to ask the patients making this choice the simple question, “what DO you want your chest to look like post-mastectomy?”
Traditional surgical techniques to remove all redundant (excess) tissue and create a smooth contour go a long way to producing results patients can live with. But even with a dedicated and highly skilled oncoplastic surgeon, and/or plastic surgeon using traditional techniques, patients can be left with significant concavity – the appearance of being “scooped out.” Concavity is currently addressed with fat grafting, which means additional surgeries, pain and bruising at the donor site, uncertain cosmetic results, and sometimes produces hard lumps (fat necrosis) which can be distressing to patients.
The New Middle Way? Using Local Tissues to Contour
What if there was a “middle way”? What if patients could choose reconstruction of a flat/convex structure or very small breast mound, with a moderately longer anesthesia burden, but without comprising any other part of their body – and without the need for multiple surgeries?
Plastic surgery techniques for breast mound reconstruction have advanced in recent years, and many of these techniques can be adapted to improve cosmesis for patients who choose to forgo traditional reconstruction. Thanks to the pioneering work of Dr. Grace Ma, Dr. Heather Richardson, and Dr. Lisa Cassileth, some patients* can now choose this “middle way” – it’s called the SWIM, or “Goldilocks mastectomy.” In this procedure, excess fat and skin adjacent to the breast tissue that has historically been discarded is instead repurposed to contour – or reshape – the mastectomy site. And it can be done in one surgery.
Figure 5(left) SWIM resulting in a slightly convex, smooth contour for an explant patient – note: patient reports some flattening of the contour at 4 months post op. Figure 6(right) traditional mastectomy resulting in normal concavity surrounded by redundant tissue (in this case, intentional flat denial)
In the SWIM (Skin-sparing Wise-pattern Internal Mammary Perforator) procedure, a skin-sparing mastectomy is first performed to remove the breast tissue. Then, excess healthy skin and fat in the local area are processed (de-epithelialized) and arranged to create “padding.” The mastectomy flap is then closed around the padding to create varying sizes of reconstructed convex structures.
The size of the resulting structure will depend on the amount of healthy tissue that was available. Larger breasted patients may be able to achieve a mound that is easily recognizable as a female breast (Figures 7 and 8 represent patients who elected SWIM at their initial mastectomy surgery). Smaller breasted patients or patients pursuing revision surgery (after a poor initial cosmetic result, or during/after explant – so may not have had the nipple preserved) may end up with a flat or only slightly convex contour (Figure 5). You can find more Goldilocks images at Dr. Grace Ma’s site.
FIGURE 7 SWIM flap results from Dr. Cassileth (SOURCE: Cassileth Plastic Surgery)
FIGURE 8 “Goldilocks mastectomy” results from Dr. Richardson (SOURCE: Bedford Breast Center)
Consider the time, risk and expense of traditional breast mound reconstruction: up to six to twelve hours under anesthesia at the initial procedure, up to 9 (or more) surgeries over a period of a year or so, upwards of a 30% complication rate, and hundreds of thousands of dollars expended.** This burden has clearly been deemed acceptable by surgeons, patients, and the insurance companies who are footing the vast majority of the bill. In this framework, is it unreasonable to consider that patients going flat should be able to access surgical procedures involving a fraction of these outlays, in order to achieve a cosmetic result that they can live with?
Patients going flat deserve equal care and consideration for reconstruction of an anatomically normal chest contour.
The goal is not perfection – the goal is parity. It’s time to ensure that all mastectomy patients receive the respect, care and consideration they deserve, to achieve a surgical result that they can live with – regardless of their surgical preferences.
See below for references, glossary, a list of surgeons who currently offer SWIM, and suggestions for further reading.
autologous flap reconstruction = use of the patient’s own tissues to recreate a breast mound
cosmesis = aesthetic appearance
chest contour = topography or three-dimensional shape of the chest
de-epithelialization = removal of the epidermis without compromising the vascularity of the dermis, to allow the rearranged tissue to heal properly
Goldilocks mastectomy = SWIM flap (below)
oncoplastic reduction = a procedure which combines lumpectomy with rearrangement of the remaining tissues to create a breast mound – similar to Goldilocks mastectomy but doesn’t remove all the breast tissue
SWIM Flap = Skin-sparing Wise-pattern Internal Mammary perforator. A new plastic surgery technique in which the extra local skin and fat of the original breast contour left over after mastectomy is folded to create a smaller, reduced breast mound. Also called “Goldilocks mastectomy.” Skin sparing is employed when possible at the original mastectomy to preserve the nipple and/or maximize cosmesis.
Who performs these procedures?
At present, only a small number of surgeons advertise that they offer these services, including but not limited to:
Editor: Julie H. Rose knew that she wanted to go flat from the moment she was diagnosed. And yet, her medical team – including the female surgeon that she had chosen specifically to try to protect herself from paternalism – made her explain her decision over and over again, as though her choice was invalid. Her concern for a good flat result was dismissed, even though she had very large breasts, which makes flat closure more technically challenging. She asked if she needed to bring on a plastic surgeon and was told, “No, this will be easy.”
After her surgery, Julie awoke to a horrifying result with large dog ears on both sides of her chest. She suffered from serious complications as a result of egregiously poor
A photo Julie took while processing everything that was happening to her.
quality of care both during and after surgery – and from the denial of her choice to go flat and get a result she could live with.
Like many victims of flat denial, Julie has decided, for now, to try to make peace with the situation. Paternalism in medicine may be waning, but its wake is littered with the bodies of women like Julie whose choice was stolen from them. Who are left to cope with this trauma alone, and in silence. No more. Here is Julie’s story, in her own words – “speaking her truth.”
I Did Not Want Reconstruction
A little over two years ago (years that seem like a decade now), I found out I had triple negative breast cancer. I immediately was thrown into a world in which I knew nothing. I knew two things for certain; I would follow the advice of the oncologist I trusted, and if I needed a mastectomy, I did not want reconstruction.
While on chemo, I impatiently awaited the results of my DNA tests to find out if I had the BRCA1 or 2 genes, which would determine whether a lumpectomy or a mastectomy was in order. I was quite fearful, truth be told, that I did not have the gene, for if I didn’t, I might lose one breast or a part of one breast, and my insurance would not cover a double mastectomy. For whatever reason, the thought of being lopsided and asymmetrical really bothered me. So, when I found out I had the BRCA2 gene (and two other defective genes to boot) I was rather relieved. I could have a double mastectomy.
Around that time, an article had come out in the New York Times about women choosing to go flat. I don’t really remember much about the article, but I was surprised that “going flat” was considered radical. The idea of having implants baffled me. The idea of having two fake, nipple-less unfeeling and unresponsive lumps on my chest actually horrified me. I’d always rather envied small breasted woman, truth be told. I’d been carrying around a cup size F or G on a 30 inch chest wall since I was twelve years old and a part of me looked forward to the freedom of not having to wear a painful bra all day, the expense of having to purchase European bras, not sagging any further, and the idea of perhaps running like I was a girl again.
I truly saw the silver lining in the double mastectomy cloud.
One takeaway I had from the little bit of reading I did is that I needed to find a female surgeon. A man would not do, for he’d surely have a patriarchal attitude that would pressure me to be “normal” and get those implants like most other women do. I live in a small rural town, albeit with a good hospital and good oncology department, but there are only two general surgeons, both men, at the hospital. So, I went surgeon shopping. One name kept coming up again and again, a woman at a large hospital in a city a little over two hours away. So, I made an appointment to see her. When a nurse called in advance to talk some things over with me, I was clear that I did not want reconstruction.
I Felt I Was in Good Hands
My husband and both my sister and brother-in-law came with me to the appointment. We were all awed by the impressive new-ness of the cancer center and felt I was in good hands. My husband and I met with the surgeon and was quite impressed. We had a rollicking good time, in fact. She had a dark sense of humor – so do we and we chatted like old friends for nearly an hour and a half. But, her office had arranged for me to meet with a plastic surgeon to talk about reconstruction after I met with her.
I said I had no interest in doing so and was confused as to why it was scheduled since I’d been so clear about my intentions. “Oh, we just want to make sure you know all your options,” said the surgeon. I remember feeling some pressure. Was I being too hasty or flippant about my choice? Still, I talked some more about why I did not want fake breasts and the surgeon told me she truly understood how I felt and that she, too, might make the same decision. I did feel understood. She examined my breasts in private before we left. The exam lasted no more than five minutes. We went home.
Growing Unease
I had to wait five weeks until after my chemo was done before surgery, and during that time I joined a Facebook group for women who go flat. I started seeing photos that showed mostly awful results. I saw women who had been as clear as I had who had doctors “leave something extra just in case you change your mind.” I saw a lot of unhappy women and very few with results that I considered “smooth and flat” as I would have liked.
I began to look at my body like I do some sewing. I recalled the surgeon saying the surgery was “easy – so easy I could teach you to do it!” My wide pendulous breasts started at my back. How easy would it be to surgically remove them and leave a nice result? I pondered the fact that we’d never discussed outcomes at the meeting. Over and again, I had to explain why I wanted to go flat. Never did we discuss what that would look like. Being flat just seemed to be not choosing implants. Or perhaps not caring what one looked like afterward.
So, I got in touch with the surgeon’s office. I called. I emailed. Again and again, I was told “Don’t worry so much. You’re thin. It’ll be easy to make you flat and smooth. Dr. Beckett (pseudonym) is a great surgeon.” And not once did I question my growing unease – after all, I’d been uneasy for six months of chemo. Dr. Beckett was someone everyone admired and told me I was lucky to be having surgery with. I put my unease aside and assured myself that I was in good hands.
In retrospect, I wish I had listened to myself. I hadn’t gotten what I wanted – a discussion of the outcome. I had been grilled too much about why I wanted to go flat. I had to tell the surgeon, a nurse, and a social worker why I wanted to as if having to prove my sanity. I’m telling this story backward, but later my oncologist told me that I should have told them I was a trans person in order to be heard properly.
Surgery Day: I Felt Like Everything Was Wrong
The day of the surgery we were in for a surprise. I was having the surgery at a day center! I knew I wasn’t having the surgery at the hospital, but I did think it was a surgical center, not a day center, not a place where there was no food for patients and they got you in and out as fast as possible. Here I was, having both my breasts removed, and most of the people there were having tiny procedures – things like having cysts removed. I was baffled because I was supposed to stay overnight.
Well, it turns out that they do let people stay overnight, but there are no services – just a nurse and a security guard to oversee things. They let people stay overnight if they live far away; it’s simply a courtesy. If you want food, someone has to bring it in. So, I’m in prep and thinking, “This is no place for a mastectomy!” If I wasn’t in so deep, I would have left right then and there. My sister-in-law, who had come down with me, was upset and tried not to show it. And on top of this startling news, there was a snowstorm bearing down on us.
The surgeon came in and wrote something on my chest. She was in a hurry. Honestly, I don’t remember much more about the pre-surgery except my fear and angst. Fear, because I was having my breasts amputated – the feeling of impending loss was huge – and fear because I felt like everything was wrong. I was being treated like a piece of meat.
“… I felt like everything was wrong. I was being treated like a piece of meat.” – Julie
No one spoke to me about what was about to happen. I had no opportunity to even begin to process the emotional toll of the surgery. It was the most non-nurturing and non-supportive environment imaginable. The cancer center may have been impressive, but this place was not. The waiting room was beautiful, cavernous and full of life, but once you were behind the doors and in the surgical waiting area, it was one big un-private ER-like setting. You could see everyone and they could see you.
And then it was done.
The Aftermath
Dopey and cold, I awoke, bandaged up. The surgeon had gone home; she couldn’t spare a moment to speak to me. It was snowing outside. The place was already clearing out. The staff was low. My sister-in-law was very concerned that we just go home. She was afraid that we’d be snowed in and unable to get food and the staff agreed. Just three hours after I went into surgery, we got into a car, in the snow, to make the drive home, me nauseous from pain meds and confused and emotionally both numb and terrified. I could see that I had severe bruising above the bandages. They were worrisome. Big black bruises and an enormous amount of swelling. The nurse who discharged us didn’t know anything about mastectomies – “We’ve never had anyone who’s had one here before.”
I was discharged without pain medication. The story here gets long and crazy and convoluted and I won’t bore you with it. I’ll skip to the fact that three days later my chest wall burst open because those bruises were not normal – I had been hemorrhaging for days. I was taken from my apartment in an ambulance where I needed a blood transfusion as I’d lost so much blood when the stitches burst open.
It was after this that I finally saw my chest. I had one huge notch taken out of my left side and on the other it looked like part of my breast had been removed. I had “dog ears” under both arms. What on earth? What happened to the “don’t worry – you’ll be flat and smooth ‘cause you’re thin?” The scars were jagged. It looked like the surgeon had done the fastest easiest job she could in the least amount of time, and indeed that appeared to be the case. She had told my sister-in-law that it would take 1 1⁄2 to 2 hours to do the surgery. She was done in an hour and twenty minutes and then she disappeared from the building.
She did a horrible job. It grieves and angers me to think that this woman treated another person – another woman, too – with such a lack of care. I had asked if a plastic surgeon should finish the job. “Oh, that’s not necessary! This is easy” she said. Sure, it’s easy, if you do a slapdash job. But no, I suppose her ego was too big to think perhaps that my wide-slung breasts on a tiny frame might pose a problem for her skills.
The male surgeon at my small local hospital did some revision when I had my chemo port taken out. I needed further surgery as I kept having seromas near the place of the original hemorrhage. He did a bit of liposuction then, but I really didn’t want a lot of surgery, so I’ve still got one dogear. The scars where he worked are neat; on the original surgeon’s side, they are not.
Making Peace With What Happened
I heal scars easily, so at this point, I just look like a human doll with a concave chest. I see photos of transmen and have to admit I’m jealous. I’m okay with not having nipples – none of my Barbie or Skipper dolls had ‘em so I suppose it isn’t as weird as I thought it would be.
I feel lucky that my being an artist has helped me accept my form to some extent – it’s not “pretty” in any sense of the word, but it’s interesting. Would I like to have had a better result? Yes indeed. Would I have liked to be treated like a human being with reasonable needs? Even more so.
Every time I see my chest naked I am reminded of the violation that surgeon did.
Artist: Carole Reid – Twitter @clreid56
Still, I haven’t had any more surgery. I’m now 61 years old and I simply do not want to go under the knife again. I’m learning to love or at least accept the rest of my aging body without plastic surgery and my chest seems to be a part of that. This is what happened. It isn’t right, but it is my reality. If I chased some idea of perfection now, for me it would be a slippery slope to wanting cosmetic surgery elsewhere. Still, some days I think otherwise. . .
I like to find the silver lining in things, so here they are: One surgeon did treat me well (a man). My husband never once questioned my decision. I have never once been judged by others for going flat. I am comfortable being flat. I have reinforced my own sense that my externality is not that important. Being alive and vibrant is.
However, women who choose to not have reconstruction need to be treated with respect. I was not, and it sickens me that that is not exceptional. Websites and brochures about breast cancer do not show women their options. They do not even show real photos of reconstruction nor do they really explain the long arduous process of that. Breast cancer doesn’t get you a “free boob job” nor is it even about breasts. Sure, we may have mastectomies or lumpectomies, but having cancer treatment of any kind is about living. And living with lousy surgeries adds insult to injury.
Hopefully, things are changing thanks to women speaking out, speaking their truth, and talking back to the surgical world.
Editor: Thank you, Julie, for speaking your truth.
Note: NPOAS no longer affiliates with this website
New Resource Pages at Flat Closure NOW for Patients Seeking Explant and Revision Surgery
EXPLANT SURGERY
Our sister organization, Flat Closure NOW (FCN), just published a new resource page for women who have chosen to remove their breast implants (“explant“) and go flat!
If you are considering going flat after explant, please visit FCN’s Explant Page to learn about the process and how to ensure you get an acceptable cosmetic result! It’s not always a straightforward process to find a good explant surgeon, and there are many practical considerations patients may not be aware of, including the insurance coverage issue:
“In the United States the Women’s Health and Cancer Rights Act of 1998 requires almost all insurers to cover breast cancer related surgeries, including explant… [but] not all plastic surgeons understand the law, and not all plastic surgery practices know how to handle the logistics… If your surgeon says that your insurance won’t cover your explant, consider getting a second opinion.” – FCN (our bold)
In terms of getting a flat result after explant, there is a real risk that the explant surgeon will simply remove the implants and leave behind the excess skin, producing a “deflated” appearance that is highly distressing to many patients who affirmatively chose to go flat. This isflat denial, and it happened to Suzie, a brave survivor who shared her story with Not Putting on a Shirt last year, and just this month shared her “Finally Flat” revision surgery story.
“To be clear, breast cancer patients are allowed to change their minds. This does NOT justify a surgeon overriding a patient’s clear directive.” – FCN
FCN’s Explant Page lists specific steps to take and questions to ask your explant surgeon to ensure you get a good flat result in one surgery.
Further Reading: Beth Greenfield recently wrote a great article about explant entitled “Why some breast cancer survivors are getting their implants removed” for Yahoo Lifestyle. She interviewed four women who chose to explant, as well as several surgeons, and has some encouraging words about the changing culture in the medical community.
“All the surgeons interviewed for this article believe that a shift within the medical community is occurring, if slowly, to focus on better informing and empowering patients on their options.” – Beth Greenfield (our bold)
REVISION SURGERY: GOING FLATTER
If you pursued explant surgery and were left with an unacceptable result, OR if you received an unacceptable result after your initial mastectomy despite clearly stating your wishes, you may not be aware of the possibility of revision surgery to “fix it,” i.e. create a flat contour. FCN also recently published a Revision Surgery resource page where you can learn about that process. And Not Putting on a Shirt is currently publishing a series called “Finally Flat” where brave survivors of flat denial who have had revision surgery share their stories of perseverance and hope.
It was after this that I finally saw my chest. I had one huge notch taken out of my left side and on the other it looked like part of my breast had been removed. I had “dog ears” under both arms. What on earth? What happened to the “don’t worry – you’ll be flat and smooth ‘cause you’re thin?” The scars were jagged. It looked like the surgeon had done the fastest easiest job she could in the least amount of time, and indeed that appeared to be the case. She had told my sister-in-law that it would take 1 1⁄2 to 2 hours to do the surgery. She was done in an hour and twenty minutes and then she disappeared from the building. 