Melissa’s Story: Breasts Don’t Define Me


Melissa learned she was a BRCA carrier after losing her mother and sister to cancer in short order. She chose to have a prophylactic bilateral mastectomy without reconstruction and believes that breasts do not define who she is as a woman.


My mother was a breast cancer survivor. Diagnosed at age 64, she underwent chemo, radiation and a partial mastectomy. She survived, cancer free until the age of 84 when she passed away from an unrelated incident. Mom died just this past July, a short three months after my sister who was riddled with cancer. It started as uterine and spread throughout her body quickly. Losing your sister and mother within months is devastating. Throw in my own genetic testing which revealed a BRCA2 mutation and you’ve got the WORST YEAR EVER. I had already prepared myself for the news, my mom, my sister, and also my maternal grandparents died of ovarian and pancreatic cancers, in my mind it was inevitable.

I am completely supportive of those who do choose reconstruction, however it just didn’t feel “right” to me.

September was the first surgery, an oophorectomy (took out those pesky little ovaries of mine). Recovery wasn’t too awful, three little incisions and a little cramping. I wasn’t really prepared for the whole menopause thing smacking me in the face, but alas, I persevere.
I am now on week four after my double mastectomy. I am completely supportive of those who do choose reconstruction, however it just didn’t feel “right” to me. For me, it just didn’t make any sense to have boobs just to have boobs. They don’t define who I am as a woman, and if I’m being honest I’m really looking forward to not having to stick my shirt under my chest to sop up the boob sweat. Haha. I am still adjusting to flat life. Sometimes I reach up and am shocked that they’re gone. Time heals all, and I am lucky. Lucky that I had to opportunity to be ahead of that bitch cancer. My greatest wish is that others who have access to genetic testing take advantage of it. It may have saved my life.


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Disclaimer: Any and all information published by Not Putting on a Shirt (NPOAS) on behalf of a third party is for informational purposes only and should not be taken as a substitute for medical or legal advice from a licensed professional. Views expressed and claims made by third parties do not necessarily represent the views of NPOAS.

Natasha’s Story: PBM & No Regrets


Natasha, a nurse of 20 years, had a prophylactic bilateral mastectomy (PBM) after testing positive for the ATM gene mutation. She chose not to reconstruct and has no regrets.


After discovering I had a genetic mutation (ATM mutation) last February 2021, I had choices to make. I learned that I was at higher than average risk of getting breast cancer (15-40%), ovarian cancer (3%) and pancreatic cancer (5-10%). The number that made me most uncomfortable was the risk of breast cancer and I could not imagine a life of screening for this (I am 47 years old). After speaking about options with my healthcare providers, I decided to do a prophylactic mastectomy without reconstruction. Having been a nurse for 20 plus years at the time, I had spent time thinking through personal decisions I may have to make one day. One of the decisions was “What would I do if I got breast cancer?” I had thought I would get a mastectomy without reconstruction if that were to ever happen. I honestly did not think I would ever have to actually make this decision—we do not have breast cancer in our family and my lifestyle has been top notch most of my life. But, alas…

I ended up getting a prophylactic mastectomy without reconstruction on May 17, 2021. I think the biggest decision was thinking through if this was a crazy decision. I had to find my own voice and own values as I processed through this. I had to be articulate with my healthcare team so they would support me. It was helpful that my husband was supportive too. It was helpful that I’m petite and athletic and very small breasted to begin with.

I had to find my own voice and own values as I processed through this. I had to be articulate with my healthcare team so they would support me.

Looking back, I have no regrets. I do not know if there are others out there like me, but I like being flat. I wear a padded bra even with tighter fitting shirts. I think because of my petite size no one even notices. I love when I jog now. I do not have any “extra baggage” bouncing around. It is liberating. With bathing suits I buy frilly tops and once again, no one seems to notice. I am happy that now my risk of breast cancer is lower than average. This feels good. I like that I do not have to do annual MRI’s or mammograms. I still have to deal with the other cancer risks but those numbers are smaller and I can deal with that. It was an empowering process to go through. I realize that I do make decisions that are best for me even if they seem crazy.


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Disclaimer: Any and all information published by Not Putting on a Shirt (NPOAS) on behalf of a third party is for informational purposes only and should not be taken as a substitute for medical or legal advice from a licensed professional. Views expressed and claims made by third parties do not necessarily represent the views of NPOAS.

Kristin’s Story: Is It Worth It?


At age 31, Kristin was told her only option after her mastectomy if she wanted to keep her self-esteem intact was to reconstruct her breasts. Kristin experienced significant pain and post-operative complications from her tissue expanders, and her plastic surgeon installed much larger implants than she initially wanted. She was never comfortable, physically or emotionally, with her implant reconstruction, and suffered for five years before finding a surgeon who took her concerns seriously. She explanted and after ten months being flat, Kristin is finally comfortable in her body.


I had only one option: expanders placed under my skin at the time of my mastectomy and  gradually filled until they reached the desired size, at which point they would be swapped for silicon implants. It sounded terrifying to me. I asked for other options. There were none. He declared that a breast reconstruction could keep a woman’s self-esteem intact after breast cancer; research had proven it. He said I would love my new breasts, probably even better than my old ones. Spoiler alert: he didn’t know what the hell he was talking about. Having never had breasts, breast cancer, breast implants, or the experience of total permanent loss of sensation in his chest, his confidence was ill-informed. But at the time I saw no reason to disbelieve him since he was the expert on breasts and plastic surgery after cancer – but I forgot that I was a kind of an expert too… 

I asked for other options. There were none.

My mom lost her right breast to cancer when I was seven. She was only thirty-four. She never left home again without her replacement boob fastened snugly around her petite five-foot-three frame by a large, beige, straitjacket of a bra. She hated her heavy, rubbery prosthesis – especially in the blistering Arizona summer heat when the sweat gathered up behind the silicon patty and ran down her stomach. Thirteen years later it was her left breast that had to go. I remember my mom’s self-conscious fretting over whether or not to put on her prosthesis before going to pick up a pizza. Honestly, no one would have noticed one way or the other and I don’t think they would have cared even if they did notice, but still she fretted.

Despite my mother’s experiences, or perhaps because of them, I believed the plastic surgeon when he told me that going flat was not a good option for a healthy woman of my age. So only a year after my mom’s death from ovarian cancer at age 56, and now faced with my own cancer diagnosis at age 31, I decided to reconstruct my breasts. 

The process was more painful than I had anticipated. I had some minor complications which turned into major complications when I became dependent on opioids and went through withdrawals, which landed me in the hospital. After that, everything went pretty smoothly but I was consistently having second thoughts about my choices and every time I expressed my misgivings about reconstruction I was talked over and dismissed by the surgeon. It was disorienting. I didn’t know how to respond. He assuaged my discomfort by telling me I had total control over the process and could choose what size I wanted to be. I took the decision seriously: I pondered, I wrote in my journal, I called a friend, and I considered the role my breasts had played in my life up to that point. Amidst all the jokes of “go big or go home” that I kept hearing from nearly everyone I knew, I decided that I wanted my breasts to be only just big enough to look “normal”, but no bigger. At my next appointment I announced my decision to my doctor, at which point, instead of acknowledging my choice, he said,

“But you don’t want them too small…”

I did not know how to reply to that so I was quiet. He told me that when I felt they were big enough I would need to have one more saline fill in order to make the “pocket” one size bigger than the implant, so that the implant would fit: I only had to let him know when I had reached that point. A couple weeks later I notified him that I had arrived (and surpassed by one appointment) my desired breast size. I was surprised when he chuckled and told me that I wasn’t done, made a joke (that I no longer recall) with a *wink wink* to my husband, who was there with me trying to be supportive, and filled me up again. I went on to have one more fill after that per his expert opinion. Later that month when I was under anesthesia in his surgery center he decided that my “breast pocket” was big enough to accommodate an even larger implant than we had discussed. And that’s how I ended up with some very stiff, very high, very round balls stuck to my chest. For five fucking years. 

After surgery, I sought consolation and encouragement in online cancer support groups; compassionate women said not to worry, that my new breasts would “fluff” and “settle” in time. But they didn’t. I tried to be patient; I took deep breaths, I appreciated my silhouette in the mirror, I tried on lots of new clothes, and I waited for the day when I would feel at home in my body. But instead, panic gradually began to set in. I had days when I wanted to rip the orbs off my chest; but then I had months in between where I didn’t think about my breasts at all. During those times I thought to myself— I can totally do this. The size of my breasts caused a few minor problems: I could no longer find bathing suits that fit me. My breasts were too high to be contained by a one-piece swimsuit and I looked like a porn star no matter what bikini I wore. I was in my mid-thirties at this point, with three children, and getting attention in public for the size of my chest; this was not something I ever wanted. 

I was told that only women with gender-identity issues choose to forgo reconstruction. 

Sometimes the panic became overwhelming and I’d schedule a consultation with a plastic surgeon, not knowing what I was looking for but feeling desperate. Twice I was told that without my “foobs” I would be deformed; I was told my self-esteem would suffer; I was told that smaller implants would absolutely not make me feel more comfortable; I was told that women who remain flat experience the same “sensory issues” I was experiencing; I was told that my fake breasts are so beautiful and it would be a shame to remove them; I was told that only women with gender-identity issues choose to forgo reconstruction. 

After each consultation I retreated into a fog of self-doubt. I knew for certain I was physically uncomfortable in my body and now I began to look inward to discover any possible signs of gender-confusion lying dormant inside me. Nothing was adding up. 

About three years after the placement of the implants, I travelled to a family reunion in a mountain town in Colorado that was at a significantly higher elevation than my home in Arizona. I was in the hotel unpacking my bags when I bent over and heard (and felt) a loud gurgle that traveled from my left breast up through my neck. I jerked myself upright. For the rest of the weekend, every time I moved too much or bent over, the gurgle immediately followed. I was certain my breast implants had popped. I put on a snug bra and tried not to move. I called my plastic surgeon in Arizona and left a message and as soon as I got back into town I went in for a checkup. However, as soon as I reached lower elevations, the gurgling stopped and the plastic surgeon was incredulous at my story. He told me that nothing I described could possibly have happened because implants don’t do that. He offered to get me an MRI if it would make me feel better, but the cost was around $2,000 and I didn’t have the money for it at the time. He was certain that all I needed was a little bit of fat grafting and some nipple tattoos and I would feel awesome about my breasts. He sent me to the other room to meet with the financial consultant and I left with a quote for the work necessary to make me happy (a grand total of $3,400). I sat with that information for a few weeks, considered everything he had suggested, and then suddenly realized that I had not been heard, or helped, at all. But I had no idea what to do about it.

A couple years later during a consultation (different city, new plastic surgeon) I was told that the problem is all in my mind. This doctor suggested that a prescription for Gabapentin would probably make me feel much better about my breasts. I left with a referral to a pain clinic, and a fresh batch of self-doubt. I had discussed with her my fears about rupture: the FDA recommends an MRI of breast implants 3 years after placement and every 2 years after that, a test that I had not yet been able to afford (and five years had passed at this point). I felt ongoing anxiety about what was potentially happening in my body and a total loss of control. This surgeon said not to worry about it because Mentor implants have been proven “strong enough to be run over by a car”. I tentatively accepted her answer, but in hindsight I wondered, if it’s true the implants have been tested under the wheels of automobiles and apparently passed with flying colors, why does the FDA recommend they be diligently checked? What are they checking for? 

Despite my misgivings I did my best to take the surgeon’s recommendation about medication seriously and I truly intended to follow through with the pain clinic but weeks went by and something kept stopping me from making that call. And then one day I came to my senses. 

I was ANGRY. 

Finally, angry that after five years no one had listened to me. Angry that my thoughts, my feelings, and my comfort had been unimportant from day one. I was left with the fact that in five years I had never “bonded” with my so-called “breasts” like I had been assured I would. And the reason is because I never wanted them! You can’t bond with a foreign object that was forced into your body, and you can’t heal from an assault when everyone is pretending the whole situation is great and that the real problem is your attitude. My “breasts” had continued to be foreign, oddly-shaped, pointless bags of silicon whose sole purpose seemed to be to make other people feel better about looking at me. I decided that moment to pursue other options. I decided I would see 100 surgeons if I needed to until I found one that treated me like a human being. 

The very first surgeon I saw was absolute gold. He asked me dozens of questions and listened carefully for almost an hour. He asked me how I felt about my old breasts (the real ones), he asked me how I felt about myself, how puberty was for me, about my history with my own femininity, with motherhood, etc. When I got to the part about cancer and my experience with reconstruction he sort of shook his head and scowled and said I should never have had to change my identity to suit my reconstruction but rather my reconstruction should have suited ME. I was stunned at the clarity of that statement and everything in me said ‘yep that’s it exactly’. I scheduled the implant removal surgery that day, not knowing what it would cost or what the recovery time was like or how I would look when it was all over. I didn’t care. I was just done. And even if I could have found a way to somehow live with my implants, I couldn’t live with the way I’d been ignored and made to feel small and helpless. I wanted out of the system that valued my appearance over every other consideration. I wanted to feel safe in my body. I wanted to feel at home. 

I hope that more reconstructive plastic surgeons will catch on to the idea of being invested in the long term mental health of every patient. I hope more doctors whose profession involves surgically altering women’s bodies will take the time to study the issues surrounding women’s sexual identity and especially how it expresses itself uniquely for each woman during breast cancer treatment. They are too-often employed in an industry that values false beauty standards above autonomy, comfort, cost or the possibilities of health risks. I don’t blame them solely for not understanding. But I am angry. Angry that I was not heard and that things were done to my body without my consent while I was under anesthesia.

“At some point in my life, without realizing it had happened, breasts for me no longer represented womanhood. “

I’ve been flat now for ten months. My chest looks very different but I’m not afraid of different! Those highly sought-after, highly-valued, very expensive, much worshipped and adored (but absolutely nothing like) breasts, are gone from my body and in their place my self-respect and autonomy are beginning to bud. At some point in my life, without realizing it had happened, breasts for me no longer represented womanhood. After all, my mother remained a woman even with scars and a concave chest wall. I’m not afraid to look like my mother. And although I hope my daughter will never have to go through what I did, she is not afraid to look like me, either. Because I love my body, I dress it up, I praise its virtues, and I dance naked in front of the mirror as often as I can.


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Disclaimer: Any and all information published by Not Putting on a Shirt (NPOAS) on behalf of a third party is for informational purposes only and should not be taken as a substitute for medical or legal advice from a licensed professional. Views expressed and claims made by third parties do not necessarily represent the views of NPOAS.

NPOAS welcomes Joanna Atzori (@UnBreasted) from Australia to the Council of International Advocates!

NPOAS is thrilled to welcome Joanna Atzori (Australia) to our Council of International Advocates! Joanna is passionate about ensuring women in Australia, particularly younger women, know about their breast cancer risk and their rights under Australian law. She advocates for awareness & aesthetic flat closure at UnBreasted and on Instagram @jatzori

“Joanna is a breast cancer survivor since 2019 when, at the age of 41, an impromptu mammogram discovered triple-positive invasive DCIS cancer throughout her entire right breast which had spread to her lymph nodes. Following her unilateral mastectomy, she lived for 18 months as a uniboober but became increasingly dissatisfied with her appearance and remaining saggy left E cup breast. 

“After her active breast cancer treatment concluded in 2020, Joanna was certain that reconstruction was not what she wanted. She opted for prophylactic mastectomy of her remaining left breast and at the time she had no idea she was receiving an aesthetic flat closure. She was blessed to be under the care of a patient-focused surgeon who never once pressured Joanna into opting for reconstruction. 

“In the same year as her diagnosis, Joanna became a co-administrator of the Sunshine Coast Breast Cancer Friendship Circle, a social group for breast cancer survivors who meet regularly to connect and offer each other friendship, support and understanding. She is an active member of her local breast cancer community and receives enormous satisfaction from supporting others in their survivorship. She is a state representative of Can At 40, Do at 45, a national campaign advocating for Australian government changes to more actively promote free breast screening services to women aged 40 years and older. Her remarkable diagnosis story has been published in That’s Life! magazine and the Sunshine Coast Daily where she proudly shares the story of her life-saving mammogram and her satisfaction with choosing aesthetic flat closure.”

Facebook: https://www.facebook.com/UnBreasted

Instagram: https://www.instagram.com/jatzori/

Hashtag: #UnBreasted (formerly #TheUniboober)

NPOAS 2022-2023 Two Year Strategic Plan

Here’s our detailed aesthetic flat closure advocacy roadmap for the next two years, give or take, broken down by category. Join our mailing list, or follow us on social media to stay in the loop. Contact us with questions, comments, or ideas – we’d love to hear from you!

Target: WHCRA (Women’s Health & Cancer Rights Act)
  • Push through state legislation to require insurance coverage of aesthetic flat closure services and further codify the term “aesthetic flat closure.”
  • Organize research into nationwide prevalence of insurance denials for flat closure and revision services to quantify how widespread the problem is.
  • Continue to build a coalition of breast cancer advocacy organizations to promote the WHCRA amendment.
  • Make the case to federal legislators that the WHCRA should be amended to include aesthetic flat closure (aka chest wall reconstruction).
Improved Standard of Care
  • Outreach to the National Accreditation Program for Breast Centers (NAPBC) about their protocol and the case for an amendment to include aesthetic flat closure, ahead of the 2022 ASBRS Meeting.
  • Attend the 2022 ASBRS Meeting and interface directly with breast surgeons and researchers to advocate for an improved standard of care for aesthetic flat closure.
  • Continued consultation and collaboration with all stakeholders to encourage the widespread adoption of an oncoplastic approach to mastectomy. Identify barriers, stakeholders, and steps necessary to achieve this goal.
  • Work together with leading surgeons to integrate AFC technical training into general surgery residency.
  • Grow our new professional tool, the Aesthetic Flat Closure Surgical Photo Database. This tool is a collection of surgical before and after photos filterable by patient body habitus characteristics and surgical/medical parameters. It will serve to facilitate clear communication between patient and provider and help to align expectations, allow patients facing surgery to visualize what they might look like post-operatively, and provide data to support AFC research and surgical training development.
  • Publish and distribute to hospitals and clinics our NEW brochure for medical professionals, a collaboration with @LessThanTwoBreasts (IG), “My Choice: AFC”.
Research
  • Encourage research on insurance coverage denials for flat closure and revision services (and use those statistics – along with the new NCI definition of aesthetic flat closure – to support our case for amending the WHCRA).
  • Support development of standardized oncoplastic training for AFC.
  • Support development of a clinical scoring tool to objectively evaluate aesthetic quality of flat closures.
  • Support development of a new (or amended existing) PRO tool to evaluate patient outcomes after going flat and investigate association with aesthetic quality using the new scoring tool.
Coalition Building & Inroads to Hospitals
  • Work towards the formation of a Young Professionals Advisory Board – in tandem with outreach to medical students and surgical residents.
  • Work to characterize the barriers to parity in each country and determine how NPOAS can maximize the translation of our work in the US to other countries (and vice versa).
  • Grow our Council of International Advocates, to amplify the work of flat advocates worldwide and present a unified message to stakeholders.
Organizational Leadership and Inclusivity
  • Continue to expand our Advisory Council to include at least one: breast surgeon, oncoplastic breast surgeon, general surgeon, oncology social worker, oncology physical therapist.
  • Nominate additional Board members with the explicit goal of ensuring representation of concerns specific to BIPOC and LGBTQ communities.
Medical Coding
  • Support efforts by the American Society of Breast Surgeons (ASBRS) to survey their membership to determine what medical billing codes are currently being used for aesthetic flat closure surgical work.
  • Continue to interface with stakeholders including ASBRS, the American Society of Plastic Surgeons (ASPS), health insurance companies, and others to finalize a mutually agreed upon coding protocol for aesthetic flat closure at initial mastectomy, explant, and revision.
  • Initiate lobbying effort to improve reimbursement by increasing the valuation of the agreed-upon insurance code(s).
  • Continue to provide support to victims electing to pursue legal action.
  • Support professional investigations into the ethical issues surrounding aesthetic flat closure and flat denial, to spark the conversation and encourage development of systems of incentives and accountability in this setting.

Thank You for Your Support…

Let’s go 2022!

Milestones in AFC Advocacy 2020-2021

Thanks to the tireless work of flat advocates and our supporters, and despite a global pandemic, we saw major progress on the flat advocacy front these past two years. And we expect to see even more progress in 2022! While much of our two year strategic plan at NPOAS has been achieved, we aren’t at the finish line yet… but we are WELL on our way!

Milestones 2020-2021

  • Stakeholders Are Supporting AFC. The OPBC add “optimal flat closure” to its mission statement, and the NCI add “aesthetic flat closure” to its Dictionary of Cancer Terms. Multiple surgical practices and hospitals now include AFC on their websites as well.
  • Research Marches Forward. Researchers at UCLA published their groundbreaking research on the patient experience going flat, which confirmed NPOAS’ pilot study results and put FLAT in the media spotlight!
  • AFC in the Media. Multiple breast cancer & women’s health platforms online published articles about AFC, and flat visibility organization Less Than Two Breasts carried out the first Stand Tall AFC awareness campaign in October. It was a huge success, featuring the premier of the first single breasted TV character, Dr. Wendy Sage!
  • Expanded Tools & Resources for Patients. NPOAS published comprehensive information pages about Living Flat, Preparing for Surgery, and The Goldilocks Mastectomy, and AFC Scar Patterns & More on our website. Also, our Flat Friendly Surgeons’ Directory is now at 300 listings and climbing fast, and is even more user-friendly with search by metropolitan area and an interactive map.

What’s in store for 2022?

We are proud to say that NPOAS was directly involved in each and every one of the milestones listed above, and we look forward to continuing our work in 2022. Here are some highlights of some of our current plans for the coming year:

We look forward to attending the Spring 2022 Annual Meeting of the American Society of Breast Surgeons to engage directly with surgeons, researchers, and other stakeholders to promote an improved standard of care for AFC patients.

We are also looking forward to new research on flat closure technique being published that’s currently in the works, and to pushing forward state and federal legislative amendments (in the works now) to protect the interests of women going flat.

We can’t wait to publish our NEW brochure for medical professionals, a collaboration with @LessThanTwoBreasts (IG), “My Choice: AFC”

This brochure will help us reach patients when they are first diagnosed, by ensuring information about aesthetic flat closure is available at oncology clinics!

We are so excited to continue to support the Stand Tall AFC campaign and attending its 2022 events!

Stay tuned for publication of our detailed Two Year Strategic Plan for 2022-2023!


Let’s go 2022!


Clinicians Leading the Way on Including AFC

Clinicians support aesthetic flat closure! This just in – leading breast cancer surgery centers UCLA (Los Angeles, CA) and Virginia Mason (Seattle, WA) both now include aesthetic flat closure on their websites! Cape Town Plastic Surgery has an excellent page on AFC as well. Our thanks to all clinicians who support AFC, for being a voice for patients and promoting informed consent for mastectomy patients!

ASPS Roundtable Includes AFC

The new American Society of Plastic Surgeons (ASPS) Breast Reconstruction Roundtable (a six part series) includes aesthetic flat closure and SWIM (Goldilocks)! Groundbreaking!

WATCH HERE

Thanks to ASPS, Drs. Paris Butler (one of our Flat Friendly Directory surgeons!) and Kelly Killeen, and patient advocate and founder of AnaOno Dana Donofree! Nice work putting FLAT on the menu, folks!