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.
Abby and Sylvie, owners of Play Out Underwear made a great leap of faith in producing this project. I am glad to have been invited, thank you, Abby and Sylvie. Here is an excerpt of Abby’s essay:
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.
#breastcancer #breastcancerawareness #fuckcancer #gender #genderqueer#flattopperpride
#playoutnyc #lgbt #breastreconstruction #queer#flatreconstruction #support #breastlessbeauty #queerbreastcancersupport#PlayOutUnderwear Nomi Ellenson Photography Bronwyn Karle Rain Dove
Thank you.
Melly
Melanie Testa 
Beautiful, heartfelt words from a beautiful woman. I know I will come back and read this post and the associated links many, many times. There is strength here. The strength of knowing oneself and accepting oneself regardless of the physical form. I have always felt, from a very young age, that beauty is what is inside us and reflected in our actions in the world. I have always wanted a male body. Not because I don’t like being a woman, but because I liked the lines of a male body. Perhaps it is because I had a Marilyn Monroe body when a Twiggy body was vogue. I just remember wishing my breast would get out of the way because they were interfering with my baseball swing. 🙂
Once again, your words have touched my soul. xoxo
P.S. Your muscles are amazing! Woot!
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Jeannie.
Thank you.
Yes. I have been exploring what it means to be and feel authentic to this experience. This body. I love my chest. I think my pecs look great. This is enough for me. More than enough. I like presenting male. Love. It.
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Yes, there is strength there. I read through your article with much interest. It is interesting and informing to read of your thought processes and your journey.
While I’m not particularly attached to my breast, rather detesting the size sometimes, I’m not at all sure that I would have such a clear mind on the issue.
I admire your forthrightness but even more so, your inner strength and desisiveness. I have a friend who had the reconstructive surgery which was not an easy surgery for her. I think at this point if she had a recurrence in the other one, she would not choose it.
Thanks for sharing and raising awareness on this issue. Again, I so admire your fearlessness, and your seemingly peaceful and firm insightfullness. (Sorry, having a hard time expressing this morning).
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Holly, i feel as if this decision is firmly planted in, don’t look back. I really did not want an asymmetrical body. There are no correct responses in this situation. There are only individual women and that woman’s needs and wishes given her situation. The option to go unilaterally flat, or bilaterally flat is an option among many and one that needs as much discussion and acknowledgement in the doctors office as the rest of the options.
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I was diagnosed April 2014, I also chose a bilateral mastectomy with no reconstruction. My surgeon also tried her best to get me to consider reconstruction even though I wouldn’t be able to for at least a year after the mastectomy. I had always known I wouldn’t reconstruct and I did do chemo first and had a good 6 months to think about it. Now here I am done with all active treatment and still standing firm, I’m a wife and mom of 3 and my decision was as much for them as it was for me. I needed some extra assurance that I was song all I could to lessen the possibility of a recurrence as much as possible so after chemo surgery radiation a little pill everyday for the next 10 years I’m good to go. Thank you for your words and trust me when I tell you you are not the only one. Oh and I work in an office building and I get so huge kick out of the states, it’s my own little form of awareness, sending you love all the way from Chicago!!!!!
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Whatever works for you. These things help give us closure. It is hard to survive cancer!
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Nice article, Melanie! I was diagnosed twice, in 2009 and 2013. The first time I had mulitifocal DCIS, so no choice on the unilateral mastectomy (I often say one of the worst things about BC is all the friggin’ CHOICES!). I wanted to keep sensation in the unaffected side, so I chose implant on one side and reduction on the other. The PS still didn’t reduce that one as small as my one-fill implant : ( – close, as long as I stayed very thin.
However, 4 years and tamoxifen later I found a lump in my armpit RIGHT NEXT TO THE IMPLANT. Not even the same kind of cancer, but Triple Negative this time. After my chemo I deconstructed the implant (which was already becoming problematic), had mx on the other side and went Flat and Fabulous. I don’t regret it one bit.
I am blessed with onc’s and a surgeon who never questioned my choices (I wonder if – as sort of ageism? -they do so more with younger women – I am 58 now). I used photos from Flat and Fab on FB to make sure I was being perfectly clear on how I wanted my appearance. I also am blessed with a new(ish) husband and children who are fine with my proudly flat fashion choices.
I must agree re: the fashion industry. I wear form fitting shirts, but find it annoying the difficulty in finding other tops without darts. Mens button-downs are perfect until we get to the hips. I’m hourglassy still from the waist down – I view it as a shopping challenge ; )
Since chemo made my already-curly hair even More So, I now wear my hair very short. I have no gender confusion issues (my husband will agree wholeheartedly). Strangers may look at me and wonder, but let them! We come in all shapes, sizes and flavours. I feel a bit sorry for my women friendswho deal with Breast forms in our 100 degree + Texas summers. Hopefully I can encourage them to shed them now and again, but I honor their choices, too.
Sorry to go so long! Thank you for speaking out for all of us.
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Carol, I am of the belief that if we question the fashion industry and give them something to respond to, we will get what we need. This is the reason I wanted sexy photos taken. They needed to match the level of focus and discussion that I want and feel compelled to stir up.
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After failed reconstruction – no talk of NOT doing reconstruction @ age 60 – during chemo I had plenty of time to do research. I discovered about 50% or more did not reconstruct. I lived for a year as Unabomber, wearing prosthesis daily. I hated being lopsided! After a MUGA test showed my heart strong enough for surgery, I asked for preventative & symmetry mastectomy on the other side. My oncologist & plastic surgeon were onboard, but i to argue with my breast surgeon – and it was very heated on her side! I stayed calm & stated my case & explained that this decision had been made over a year’s time, but SHE went between yelling & near tears. She presented a number of arguments, all the while changing facts as she progressed. She finally agreed, but it changed our relationship. I did have the surgery, asking to be as flat as possible, but I am going to have to go back to get “extra” skin removed – I’m not happy about that! Now I live symmetrical; if I want to wear forms I can (I haven’t!) & if I choose not to, that’s my decision. I have different size forms (knitted knockers type & silicon) but I feel more natural going natural. Clothes are a challenge – I’m working on the Buddha belly – but I haven’t noticed anyone staring! The group Flat & Fabulous and women like you & your stories helped me to see my direction & to understand that yes I could be comfortable in my new skin. Thanks for telling your story!
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*Uniboober, hate autocorrect!
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I am sorry about the autocorrect thing.
I hear you. I just want all of this discomfort to dissolve.
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Fantastic! I totally agree! I lost both breasts to BC 5 years ago. I refuse to wear prosthetics. I refused construction. Doctors thought it was strange! My breasts did not make me who I am! I’ve been flat since surgery and will remain flat. To be honest, in the first few months, I wondered if anyone was looking at me while out in public, but I quickly learned to not care…….I’m me……without boobies…….and it has not changed who I am. I have no regrets about my decision……….hey, I’m alive! Oh, and I also love love love never having to wear a bra again!
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I had my first mastectomy 27yrs ago and my second 26yrs ago as a newly wed. I opted out of reconstruction because more surgery seemed like more mutilation. My husband was supportive and agreed with my decision. His first wife died of breast cancer and had gone through reconstruction. Reconstruction was not something that was important to him having gone through it with his first wife. I have been happy with my decision and so has he. I applaud the author for her decisions and her outlook and for sharing with all of us
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I can’t imagine being present to two different experiences of reconstruction. I have to give it to our care givers. My husband has his limits. It can’t be easy to care give.
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I had a skin saving mastectomy, ended up with several deep infections and the removal of the remaining skin to try and combat that. I hate wearing my prosthesis’, they are so uncomfortable, but I do wear them when I go out. I don’t wear them when I can wear a coat, at home or when I am around my family. I am overweight and the breast forms seem to make it look not so bad, so that is why I wear them. I swear I look about 6 months pregnant without the prosthesis’ on. I would love to lose weight and just go flat all time. I am not completely flat, the surgeon left some fat/skin on my left side…. “because it will help with shaping when you have reconstruction”…. so I my chest is certainly not uniform, I look completely flat on one side and what looks like a very small breast on the other. I wish she had made it more even on both sides, I mean the scars are bad enough but to look so lopsided bothers me. It might be okay for others, but it is not what I would prefer. I do not want to have reconstruction because I had enough troubles with my first couple surgeries, I don’t heal well and do not want to through that again.
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Rhiannon, I do relate to your concerns and honestly, this is why I pose for this type project. My plastic surgery work is superb. I want women to have pictures and a mindset that will help in saying, I want this and this seems like a path I can manage.
I hear many of my fellow Flatties complain of having a belly and the pear shape that breast-less bodies can have. I say, embrace body positivity now. Move into your new shape as if all the variables you desire are in right place now. Clean up your mind and diet and exercise will fall in place IF THAT IS A TRUE DESIRE. If not, you will be equipt to proceed with love for the shape you are.
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When I was faced with a breast cancer diagnosis after having had ovarian cancer, I thought about not having reconstruction as I did not like the idea of having silicone body parts. What I did request was surgery to keep my nipples but remain flat. Apparently this is unheard of and each doctor I mentioned this too looked at me like I was insane. I said I would not mind being flat chested but would love to keep my nipples. Nome of the surgeons obliged and eventually I was persuaded to go the traditional route, with reconstruction. I am not unhappy with this choice as I did manage to maintain some nipple sensation. However it would have been nice to have had other options and spoken to women who chose them. Thanks for being a role model. If ever I decide to remove my implants I will be reminded of you and recognize that there are other options.
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Lynn, I kinda think it should go further! If we want to reconstruct to a male breast shape, that is what we should have. Have you seen great top surgery done on female to male transexuals? I have seen beautiful, beautiful work. It should be like this across the board, including breast cancer. I am surprised how much I miss seeing nipples on my body. If we can have this option, why shouldn’t we get it.
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Hi Melanie,
I have never seen female to make transsexual reconstruction. That would certainly be interesting to see. I would imagine the nipples are preserved. I would love to know more. If I saw a good result I would consider removing my implants. One is itching and bothering me today and not having them would eliminate one source of worry for me. The downside for me is that my wardrobe is very feminine and would have to have everything altered.
Lynn
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http://www.sarahperryphotography.com/blog/finding-yourself-a-love-story-part2/1/6/2015
A friend and I were recently discussing how female to male transsexual top surgery differs so radically from so many of the breast surgeries related to breast cancer. We wonder if discussion could occur between the sugeons who do FTM top surgery and surgeons who do reconstructive surgeries.
I do know of a couple women who had nipple sparing mastectomy.
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Always so eloquent. I sometimes (rarely in reality) get asked why I chose not to reconstruct. I had considered it. I had seen a plastic surgeon (and that experience bothered me on many levels). I was told it would be over a year before I would start the process as there was so much demand for these services. In the meantime, an acquaintance found a lump under her arm. Turned out her implant was leaking. That was the end of it for me, I just couldn’t imagine dealing with the potential for that. It is bad enough having to consider that the cancer might occur without it being due to a foreign agent I had implanted in my body, or the fact that this thing could malfunction and cause me unnecessary worry. When I was advised to have the other breast removed because of a risk of cancer (it was pre-cancer) I went ahead and had the mastectomy with little regret. My real regret was not having both off in the beginning. Being a uni-boober is unsettling and I felt off balance for the whole of the two years.
Truthfully, I enjoy being flat. No prostheses here, no more pocket bras. I donated my prosthesis to the Canadian Cancer Society. Someone who is more concerned about breasts may be enjoying it. I hated wearing it, I hated cleaning it, I simply disliked what it stood for I guess. For me it reeked of conformity, of complying with societal norms. As someone who hasn’t been all that good at complying with much of this stuff it just didn’t feel right. Now it does. My balance is back. Now if I could regain my eyelashes, brain and stamina it would all be good. Damn chemo! And that is a whole other topic….
Thanks Melly, for being out there for all of us!
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That should be re-occur, not occur….
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You had me totally on your side when you said you were a double D before cancer and wanted symmetry. That is such a logical wish, and as an artist, YOU get to decide what symmetry means for you. I’ve met you and the only thing I ever cared about was your fabric talent and skill. And I think this difficult and personal decision should be welcomed by doctors, not decided by them. Go, Melly!
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Great article! I am one of those women who refused to be defined by my breasts. After my stage III diagnosis, I chose to remove both breasts, and also refused to undergo reconstruction. It seemed so illogical to me. Why would I undergo the additional surgeries/procedures for body parts that I did not need. Why would I subject myself to that… for society’s comfort? I couldn’t do it, and 2+ years out, I have no regrets. Thanks for your detailed article. I hope you don’t mind me sharing on my blog. Thank you!
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Please do use this article on your blog. Sahre to facebook, use the hashtags please.
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