About a year and a half after my breast cancer diagnosis I was partaking in a pool program for survivors. We met at a local gym on the sixth floor where they had two pools, one for swimming laps, the other heated and used for rehabilitation purposes. The pool room was beautiful: light streamed in through large plate glass windows, and the quiet murmur of friends greeting one another and preparing for class filled the air. I stood in my Speedo one-piece bathing suit surrounded by my fellow sisters, some with a single breast, some wearing breast forms, others reconstructed. I noticed I was the only one who appeared bilaterally flat as I have chosen not to wear breast forms.
I had not been going to the class for long and did not know everyone by name yet. A spritely, lithe 70 plus year old woman ran up to me to say how brave she thought I was to go out flat and not wear breast forms. She then she went on to tell me that she had been diagnosed with breast cancer thirty years previously and had a single breast. She told me she hated wearing the breast form but could not seem to stop doing so. Her daughter kept suggesting that she go without wearing it, even if only for a quick trip to the corner store. But my spry friend could not wrap her mind around presenting a single breasted image of herself to the world. Within the simple act of being true to myself, a fellow survivor was able to relate to me and my choice and share her experience too.
After the pool program was over that day I walked the streets of New York City picking up groceries and preparing to go home. I began to think about how many women choose not to reconstruct their bodies and who also wear prostheses. As many as 58% of women who have mastectomies after cancer either do not reconstruct or do reconstruct and then later deconstruct, either out of choice or because of failed reconstruction. I pondered just how many of those breastless women disliked wearing prosthesis and presenting an image of a woman with breasts. Prior to my diagnosis, I had never knowingly met a single-breasted or bilaterally flat-chested woman. I imagine there are many women who don breast forms with hesitation, annoyance, or even resentment. Why do we feel that we need to promote the false impression that all women have breasts?
My experience at the pool that day launched me into considering how beauty ideals affect us women, and as survivors of the body altering disease called breast cancer. When first diagnosed, an unreasonable amount of attention and time are spent on cosmetic issues. We are asked to see a plastic surgeon to consider our reconstructive options, we are given a prescription to acquire a wig, flyers promoting ‘Look Good, Feel Good’ cosmetics classes are often taped to the walls of the waiting rooms we inhabit. And then if we choose not to reconstruct our body, we are given prescriptions for prostheses too. All, while battling a potentially fatal disease.
At diagnosis, my breasts were size DD, I could not imagine living with a single breast. Keeping one breast would compel me to wear prosthesis, as symmetry is important to me, both physically and mentally. I don’t like the idea of manipulating my body through surgery by inserting silicone under muscle, nor would I move muscle or fat from one part of my body to recreate an insensate semblance of a breast. These paths are counter to my idea of what it means to be a woman and a human. So, I chose bilateral mastectomy without reconstruction. In the industry, this is also sometimes called Contralateral Prophylactic Mastectomy (CPM).
To be completely honest, it took some care, compassion and acceptance to embrace my new and changed body. There are firsts of every kind, bathing suit shopping, using a locker room, wearing summer clothing that reveals so much more of the upper body. On the beneficial side, I love not wearing bras! Sometimes folks reveal their confusion in evaluating the shape of my body, especially if I am dressed in a mannish fashion, this is always interesting to watch and disturbed my deeply at first. But there are also moments of distinct connection, like when a legless drummer, playing music with his band in the subway, looked at me, gently allowed his eyes to dip to my chest and then smiled so deeply, I still bask in the memory of the moment. It is within these deeper moments of connection where healing and acceptance reside. These, like my experience at the pool, are the moments that provide a foundation for confidence and community.
Perhaps I am an anomaly in the world of breast cancer, having chosen against reconstruction while also choosing not to wear prosthesis. I was certainly made to feel as if my choice was abnormal by my doctors when I was asked to see a psychiatrist to make sure I was of sound mind in my ‘contralateral decision making process’. At that same office, my fellow sisters who chose reconstruction were not asked to justify their surgical choice to a psychiatrist, regardless of their contralateral choices. Perhaps my doctor wanted to be entirely sure that that they would not be removing a breast that I might come to miss, and regret my decision. I could have chosen to keep the unaffected breast. There was no question that a unilateral mastectomy was medically necessary, but I chose a bilateral mastectomy – a decision I have never regretted.
This bias is unacceptable, and clearly illustrates a preference for reconstruction to the shape of a breast and breastedness in general. It also serves to make it difficult for women to choose otherwise.
This psychiatric experience was infuriating and demeaning. I made the appointment against my wishes and because I was told my doctors would not discuss surgical outcomes without this precaution. It angered me to my core to do so. The psychiatrist arrived 20 minutes late. I was so angry that my body was shaking. I had to convince this woman – a stranger – that my choice was valid. I remember making my points, one after the other while standing in awe that my anger did not blind me. I ended the conversation with, “Have I proven myself of sound mind?” She hesitated and reluctantly said “yes.”
My doctors continued to negate my wishes repeatedly by reassuring me that I could reconstruct at any time. I had nurses respond that I would become gender confused without breasts. Perhaps the nurses who equated women to breasts are the ones who are “gender confused”.
I was also compared to a seemingly disturbed women who had tested negative for BRCA and continued to want prophylactic surgery. I asked the psychiatrist if they had a support group for women who decided against reconstruction, they did not. To add insult to injury, if I wanted to utilize the psychiatric offerings at that care facility, it would be an out of pocket expense of over 500$ per visit, as the hospital was not contracted with insurance providers for that service.
Collectively these occurrences had the effect of alienating me from my doctors and caused me to question myself and my decision making process. Through my participation in online support forums, I know that there are as many stories about reconstruction, or lack thereof, as their are women needing it. I know that not all doctors hold reconstruction in such high regard that they forget they are dealing with a woman who knows her own mind and bodily needs. I also understand that doctors need to protect themselves from malpractice suits. But here is a truth: not all women equate femininity with breasts or even like their breasts, for that matter. We are not a one size fits all category that feels comfortable committing to optional surgery that places form over function, especially considering reconstructive failure rates. (To be clear: there are three links within that last sentence)
At the same time there has been a whirlwind of discussion stemming from the medical community questioning why women choose contralateral prophylactic mastectomy (again, three different links), which completely ignores many salient reasons. For instance, why aren’t doctors administering chemotherapy first, allowing each woman a few months time to reflect rather than react to a very shocking diagnosis? These studies do not take into account that reconstructive surgery often requires multiple revisions and corrections, which takes time away from work, creating loss of income. Women with young families often prioritize being present to their children, valuing wanting to pick their children up and hug them, over the need to heal from multiple surgeries. And, like me, some women do not want to accommodate an asymmetrical body. Choosing non-reconstruction, unilateral or bilateral, is often seen as a path of least resistance. And as far as it goes, it is an easy surgery to recover from.
The Womans Health and Cancer Rights Act states that each woman’s insurance benefits must include reconstruction of the breast on which the mastectomy was performed, in addition to surgery and reconstruction of the other breast to produce a symmetrical appearance. It is hard wired into doctors to do the least harm, meaning it just makes more sense from their perspective to remove a single breast when a unilateral mastectomy is all that is ‘necessary’. But just as the woman who chooses reconstruction to the shape of a breast, can also choose to have surgery to adjust her remaining breast, women who go flat, sometimes choose removal of their remaining breast.
I personally think of “contralateral prophylactic mastectomy” as a form of reconstruction, though to name it as such is misleading, bilateral mastectomy without reconstruction is more appropriate and does not reference the idea of a prophylactic qualifier. To push the idea further, flat reconstruction is the best descriptive.
The sooner doctors and researchers collectively agree that women sometimes choose flat or bilateral mastectomy without reconstruction, the better. Get out of our minds. Stop questioning our motives and start addressing the needs of the demographic. Women who choose flat, do not want to wake up to skin sparing mastectomy, which preserves skin for reconstruction to the shape of a breast mound. We do not want ‘dog ears’ or tabs of excess fat and tissue left under the arms. We want this done in a single surgery and with the least nerve damage possible. And, we want to be content with the aesthetics of our choice.
For me, beauty ideals and expectations related to the female body are a form of tyranny. I resent that in the face of a lethal disease the conversation turns to hair and wigs, reconstruction and ‘Look Good, Feel Good’ programs. I seek to bolster a new female paradigm. In this paradigm, unilateral flat and bilateral flat, as a body type is a known and acknowledged, both in the breast cancer culture as well as outside this community, prosthesis (under the skin or tucked into a breast pocket) are perceived as an option, not a conclusion. Where, if we choose to ditch prostheses we aren’t being a martyr to breast cancer but simply, a person who doesn’t present the prescribed shape of the female body. I seek a culture where we aren’t as concerned about hiding our illness as we are about healing our bodies, our minds and the earth we walk upon.
Wearing fake breasts would do nothing positive for me, physically or emotionally; I quail at the idea of presenting two body types, a breasted public image and a flat private image. I hope that as time passes, fewer women will have to fight, like I did, to make medical choices which they know to be in their own best interest. This is why I speak out.
I want women like my pool pal to see that we are beautiful with and without breasts, we are beautiful just the way we are. There is no need to wear prosthesis if you do not want to wear them. We are free agents redefining and expanding the visual of what it means to be a woman diagnosed with breast cancer. Be your authentic self, live life your way. If that includes wearing breast forms, great, but if you don’t want to wear prosthesis, do not feel compelled to present an image that is not your own.
If I had my way, these images would be projected onto the tallest building in Times Square. The fashion industry would see the potential market in our demographic and start making single breasted and bilaterally flat-forward fashions. Breast cancer awareness websites would show flat and half-flat bodies alongside seemingly reconstructed and happy survivors, and doctors would trust and get to know their patients, while supporting a diversity of reconstructive choice.
No one should feel compelled to present a shape that is not true to themselves.
Happy Valentine’s Day.
I am thankful to Play Out, Emily Jensen of FlatTopper Pride and Jodi Jaecks for creating a platform to discuss gender, breast cancer and stepping outside bodily norms. We have curated a linked series of essays by and about three queer, bilaterally flat women, myself included. We took these images, sexy, fresh and vibrant, to accompany and assist a in discussion we feel is both ripe and timely.
Please follow these links, read the essays, comment, like and share to social media.
Emily thinks outside the box. I love reading her thoughts and ideas. Here is a clip from her essay:
I see the crisis state of cancer and loss of supposed “female” body parts as a schism ripe for effecting change personally and culturally. I urge you as Lorde urges us to: “Inhabit cancer not as a victim but as an agent” (82).
To be working with Jodi Jaecks is a blessing. I heard the nationally syndicated story of her challenge to the Seattle Parks and Recreation to allow her to swim topless, in her breastless state. This story splashed the press just at a low point in my healing and recovery from breast cancer treatment. Read her essay here. But this is a great excerpt:
I am grateful to Play Out for embodying the ethos of which I trumpet – in their words, images, deeds and products. Frankly, I don’t want this to be about gender identity or sexual preference identity. Unisex, indeed.
Instead of just looking at the pictures and saying “how brave, she survived this illness” we ask people to look at the pictures and say, “how brave, this person is challenging society’s expectations.” And winning.
View the rest of the photos taken at the two photoshoots here.
Nomi Ellenson Photography did a fantastic job, these photos are sexy, fun and playful. Just like me.
That’s me and Rain Dove! 🙂 Rain Dove is an inspiration. Keep up the good work, girl.
Bronwyn Karle, I love both my hair and makeup and now want to check out dry shampoo. Who knew.
If you would like to read more of my writings and rants, check out my post The Grace to be Flat and Fabulous, and listen to Jamie Courville’s audio sculpture by checking out this post called Squirrells Stories and then there is my oldie but goodie at Role Reboot, I Chose to Live as a Flat Chested Woman After Breast Cancer.
If you would like to continue this discussion, please include these hashtags:
Please discuss, like and Share.
#playoutnyc #lgbt #breastreconstruction #queer#flatreconstruction #support #breastlessbeauty #queerbreastcancersupport#PlayOutUnderwear Nomi Ellenson Photography Bronwyn Karle Rain Dove