Informed Consent is Non-Negotiable

Australian Woman Says Her Surgeon Placed Expanders Without Her Consent
** Update: unfolding information suggests that this situation does not represent flat denial. It may represent a violation of consent, but we do not have all the facts. This patient consented to direct to implant reconstruction. Instead of placing an implant, the surgeon placed an expander. We will update when we have more conclusive information. **

We know that about one in twenty women who choose to go flat are intentionally denied a flat closure by a surgeon who believes they will “change their mind” about implants. But leaving a patient with excess skin to facilitate future reconstruction isn’t the only egregious violation of consent that mastectomy patients face. Today we are sharing the story – and the online petition for justice – of an Australian woman, “Jane” (not her real name), whose surgeon placed tissue expanders during her mastectomy without her consent.

“… no man or woman has the right to put anything inside your body without prior consent… I’ve got a voice and I’m using it.”

Jane

Late last year in Queensland Australia, at Royal Brisbane Hospital, mother and ballet dancer Jane had a double mastectomy and was shocked to wake up to tissue expanders under her skin that she had not consented to. Now the hospital won’t remove them in a timely fashion because “it’s not urgent.” Jane has been in incredible pain from the expanders for over two months now. And she isn’t the first woman to experience this specific violation of her consent. In the UK in 2018, Donna Finegan-White woke up to unwanted implants after her mastectomy – she sued the hospital (Great Western) and ended up settling out of court.

Read Jane’s story in her own words:

“The only way to describe the sensation (not the pain) is if you could imagine a large round hard Tupperware closed with jagged edges crushed inside my skin. I am a dancer and a teacher and I need to be able to move my body free of pain…  I’m a human being and I believe we all have the right to be able to move without pain where possible. At the moment I can’t do that… the pain, throbbing, stabbing, burning and since 3 weeks pectoral spasms constantly 24/7.

The worst part of this whole diabolical episode is, that I am wasting away, at my wits end physically, mentally and emotionally. Perhaps it’s the pain, the no sleep or the fact that no surgeon can fit me in to remove it. A medical specialist recently said to me…it’s not urgent. Not quite sure she would be saying that if it was her wearing a Tupperware. 

… I’ve got to have gone through this for a reason who knows but at least if I can plant a seed out there to spread the word then I’m doing it. I have a daughter and my message to everyone out there especially my girl, no man or woman has the right to put anything inside your body without prior consent. I’m sure that goes for animals too… oh no that’s right they can’t talk… so the surgeon from RWBH that called me a scared animal, you’re damn right I am. But I’ve got a voice and I’m using it.”

Pioneers in Flat Advocacy: Trine Amazon


Pioneers in Flat Advocacy

A blog series designed to highlight and amplify the voices of the flat advocates who blazed the trail and laid the foundation for those that followed.


Trine Amazon

Trine Amazon of Denmark began blogging about her breast cancer experience shortly after her diagnosis in 2017. She examines beauty standards and gender norms from her perspective as a “magical uniboober and queer ninja,” and works to promote flat visibility.

Trine has worked closely with the hospital system in Denmark to ensure providers are offering the flat option to their patients, and one hospital even now offers flat closure pictures alongside their breast reconstruction gallery. You can find Trine’s work at TrineAmazon.com.


When you were making your reconstructive choice, how did you end up choosing flat?

“It was more the other way around. There wasn’t one single good reason for me to reconstruct, so there really wasn’t any choice. It was the only sensible thing for me to do. Less surgery, shorter recovery time, less rehabilitation training, less chance of side effects and complications.”

How has your surgical result affected your healing process moving forward?

“I think the scar is so beautiful and I love that this is a part of my story now. Don’t get me wrong, I never thought cancer was a good thing for me, but now that I had it, I think the scar represents my story and what I have been through. I love to watch it and it’s been a big part of my healing in a positive way.”

How did you decide that you wanted to be an advocate?

“Going through chemo and at the same time realising that this wasn’t a publicly known option, feeling how unrealistic beauty standards were pushing women to reconstruct, made me want to spend time on showing this as a valid option. There haven’t been many in Denmark or Northern Europe pushing this agenda, so I felt like I could contribute a lot. And it kept my mind of the bad thoughts from the disease itself. Today I’m doing it mostly on the side, but I still think it’s very important to talk about it.”

What is your proudest accomplishment as an advocate?

“There are actually many things, but they all involve the health care system. Talking in front of a lot of nurses at the yearly breast cancer conference in Denmark and feeling that I really brought some new information to them. Also got a chronicle published in one of the biggest newspapers in Denmark and this is now used by healthcare professionals in different breast cancer centers in Denmark to inform about the flat choice. And of course that I managed to change the practice at the largest hospital in Denmark to also offer pictures of flat choice to patients, as opposed to before when only pictures of reconstructions were available.”

What has been your biggest challenge as an advocate?

“Having enough time as I also work full time and want to spend time with my family and friends.”

What have you learned as an advocate that you would like other advocates to know?

“That every experience is unique and that you can only speak for yourself. This is so important to remember when you try to push an agenda, that in the end you only represent yourself.”

What is your vision for flat advocacy generally? What do you want the future to look like for women going flat?

“That it is considered a beautiful, valid and normal choice to not be questioned. That we see many flatties in society around us and that this even pushed for health reasons.”


A pioneer may start as a lone voice in the wilderness, but their passion for and commitment to their cause inspires others to join them. This has led to exponential growth in the field of flat advocacy over the last decade or so. In 2020, we have flat photography projects, full length memoirs, nonprofit organizations, communities on social media, and even gatherings across the world… all made possible by the work of the advocates who blazed the trail.

If you know of a pioneer in flat advocacy that you’d like to see featured, please let us know!


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.


Pioneers in Flat Advocacy: Sara Bartosiewicz-Hamilton


Pioneers in Flat Advocacy

A blog series designed to highlight and amplify the voices of the flat advocates who blazed the trail and laid the foundation for those that followed.


Sara Bartosiewicz-Hamilton

Together with her late friend Barbie Ritzco, Sara Bartosiewicz-Hamilton founded Flat & Fabulous, a nonprofit organization committed to empowering, advocating and providing support for those who are living post-mastectomy without reconstruction. When Sara and Barbie first started their Flat & Fabulous Facebook support group in 2014, they had no idea how quickly it would take off. As of January 2020, the group has over 8,500 members and is still growing.


When you were making your reconstructive choice, how did you end up choosing flat?

“I actually didn’t choose flat. I had a prophylactic mastectomy at 29 and did expander reconstruction. My body did not get along with implants – I tried silicone and saline. I developed burning pain and, at the same time, was dealing with autoimmune issues. At that time, my doctors did not have an answer whether or not the implants were the issue, they all supported my decision to remove them to see if it would help. Almost 6 years after my PBM [prophylactic bilateral mastectomy], I made the decision to have my implants removed.”

How has your surgical result affected your healing process moving forward?

“Because I was sick when my implants were removed, my surgeon wanted to do so with as little risk as possible. He cut open my mx scars 1-2” and removed the implants. Therefore, I am not flat. I have lumps and bumps. I debate whether or not I want revision – I always come back to not wanting to spend anymore of my life down for the count because of my mx. I’ve realized by being involved in our community, healing isn’t a given – there are serious risks to undergoing surgery. I don’t want to risk my quality of life for a shot at being completely flat. Maybe someday, not today.”

How did you decide that you wanted to be an advocate?

“Shortly after becoming flat, I was planning a vacation for my family. It dawned on me, I had no idea what to do about a swimsuit. I was involved in HBOC communities but needed advice from women who knew because they were living flat. It was then I asked Barbie if we should create a group – three weeks after becoming flat, Flat & Fabulous was born. By the way, I ended up wearing the same suit I wore with rock hard implants😂”

What is your proudest accomplishment as an advocate?

“Barbie really wanted to go viral. When Barbie told me she was dealing with recurrence, I felt entirely helpless. It was the only thing I could think of to do for her to bring one small ray of sunshine to her. The smile she gave me when I told her she did it is something I will never forget. I have talked to Facebook, reporters, surgeons, app creators – I still am most moved when I talk with a woman who was made to feel outcast or abnormal because she is deciding not to have reconstruction. In the early days, 90% or more of our members literally had no idea someone else had chosen to be flat, let alone the vast community we know exists today. I am proud our community successfully delivered the message ‘you are not alone’.”

What has been your biggest challenge as an advocate?

“There is not enough time in the day or energy available to finish the work. I have had life happen in big ways the last few years and have realized I need to step away. It’s difficult to step away from a community I love and helped build. But it’s part of living wholeheartedly.”

What have you learned as an advocate that you would like other advocates to know?

“We all choose how to apply our passion. Advocacy in general can be heartbreaking and stressful. We need to give each other the room to make mistakes and accomplish our goals for our own visions. We need to remember the common goal and understand there are many ways to achieve it, and we may all take different and necessary paths to obtain it. I am grateful for the support system I have with other advocates. We help support and inspire each other. I literally would not have been able to keep our support group running without my team. In the early days, they stepped up and helped me reach goals when all I wanted to do was grieve Barbie. Find your team, and don’t waste time and energy criticizing other advocates.”

What is your vision for flat advocacy generally? What do you want the future to look like for women going flat?

“What do you want the future to look like for women going flat? I am excited to see the landscape of surgical results change. I believe this will become the rule rather than an exception shortly. I know many of us have the ears of surgeons – I am very hopeful they will begin providing flat results during the first operation.

“I believe women need to be presented flat as an option when they are discussing mastectomy I’ve heard from many women who did not voice the thought of going flat for fear of being criticized. Choosing to have a mastectomy is a highly vulnerable time – I did what my surgeons recommended, no questions asked. So changing the conversation and including all viable choices will give each individual a greater opportunity to determine what feels right for them. This takes the continued building of relationships with our medical field and helping them understand why this is so important.

“I believe we need to be allowed to have frank conversations on how these surgeries and treatments impact us as women. I was healthy when I had my pbm – I still find my journey traumatizing. Women who wanted reconstruction and were told it wasn’t an option – they are traumatized. Women who are having treatment for cancer – they are traumatized. The women who can’t heal, the women who are burned from radiation. Those of us who have hysterectomies. We all have experienced trauma.

“Part of our collective healing is sharing this with the general population. They need us to be strong, move on and be victorious warriors. I think it is important for the human population to understand the reality – perhaps this will help humanity – heal, understand each other, grow. We need our moms, sisters, aunts and friends to get better healthcare options. We need women of color to be heard and receive the same level of care. We need better treatment options. For me, the risk of pink washing is that it further perpetuates this rosy outlook on cancer and ‘beating’ it.

“Within the last two months, three active members of our group died. I am part of the SCAR Project – including Barbie, at least six of our sisters have passed. It’s not slowing down – it’s women of all ages. Our community has accomplished so much in a short amount of time, I strongly believe we can use our passion and drive to change the general conversation and landscape  of cancer as well.”


A pioneer may start as a lone voice in the wilderness, but their passion for and commitment to their cause inspires others to join them. This has led to exponential growth in the field of flat advocacy over the last decade or so. In 2020, we have flat photography projects, full length memoirs, nonprofit organizations, communities on social media, and even gatherings across the world… all made possible by the work of the advocates who blazed the trail.

If you know of a pioneer in flat advocacy that you’d like to see featured, please let us know!


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.


Pioneers in Flat Advocacy: Marie-Claude Belzile


Pioneers in Flat Advocacy

A blog series designed to highlight and amplify the voices of the flat advocates whose work built – and continues to strengthen – the foundation for the work that other advocates are doing now.


Marie-Claude Belzile

Marie-Claude Belzile of Quebec, Canada began her advocacy work in 2017 after being diagnosed with stage IV breast cancer, undergoing a double mastectomy, and noticing that medical professionals and the public at large seemed uncomfortable with her new body.

You can find her work on her Facebook page Tout aussi femme. Marie-Claude recently published a book in which she deconstructs the cultural narrative about breast reconstruction, Penser le Sein Feministe. She also founded a French-speaking flat support group called Les Platines.


When you were making your reconstructive choice, how did you end up choosing flat?

“I knew from the beginning that I wanted to go flat. I wanted only one surgery and the fastest recovery and less complications as possible. Also, after all the photos I saw for breast mounds reconstructions, I saw nothing that could fit with me, as nothing looked like the breasts I naturally had. “

How has your surgical result affected your healing process moving forward?

“It helped me, because the outcomes of the surgery were as expected : no extra skin, nice scars. “

How did you decide that you wanted to be an advocate?

“When I had to fight with my breast surgeon to be flat. At first he was trying to convince me by telling me I was too young to be flat. Then even after I told him multiple times I wanted to go flat, he wrote on my surgery form “reconstruction, expanders”. I had the chance to see it in the hands of a nurse before the surgery and go fight with my breast surgeon for him to give me the surgery I wanted. He finally respected my choice and did a good job, but the fight I had to go through should have never happened and that is why I started to question myself about the pressure to opt for reconstruction after a mastectomy. I knew I was not alone and I started a page on Facebook, called Tout aussi femme, to help woman who decided (or want) to go flat. “

What is your proudest accomplishment as an advocate?

“I published a book about how women are pressured in society and among the medical corps to choose reconstruction. I have a feminist approach on the question and the book being published now is a first in French language, so I’m very proud.”

What has been your biggest challenge as an advocate?

“To be listened to. To have to explain again and again why this choice should be the one of the woman having a mastectomy and no one else. To find a way to reach the surgeons and oncologists about this reality too, and make them realise that those behaviors are not right.”

What have you learned as an advocate that you would like other advocates to know?

“That you have to work very hard to get the message out, but to never give up because it does make change possible. “

What is your vision for flat advocacy generally? What do you want the future to look like for women going flat?

“My vision is that the more we speak out about our realities and our fights, the more it’ll change the culture and society. I see flat advocacy to be a way for women to be emancipated by the way our bodies are policed and managed by social constructs. I see a way for getting visible to each other and to others and get validated for who we are. I see a future where women are respected and taken as the only person competent on what’s best for her.

“I would like to see flat women free of fears, anxieties, disrespect, rejections, etc. I see a world where our choices are fully taken into account without being questioned. Normalizing flat bodies will help women to feel adequate and valuable and worthy. Flat advocacy will also end wrong practices that surgeons allow themselves to do without consent like ‘leaving extra skin in case they change their mind’.”


A pioneer may start as a lone voice in the wilderness, but their passion for and commitment to their cause inspires others to join them. This has led to exponential growth in the field of flat advocacy over the last decade or so. In 2020, we have flat photography projects, full length memoirs, nonprofit organizations, communities on social media, and even gatherings across the world… all made possible by the work of the advocates who blazed the trail.

If you know of a pioneer in flat advocacy that you’d like to see featured, please let us know!


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.


Clear Language: “Flat Closure”


What does the term “flat closure” mean?

Flat closure = chest wall reconstruction post-mastectomy

Flat closure is shorthand for surgery to reconstruct the chest wall contour post-mastectomy. It is a patient-friendly term that serves as a stand-in for the more cumbersome technical description. The mastectomy first removes the glandular tissue of the breast, and the subsequent closure involves surgical contouring of any remaining excess fat and skin to reconstruct a smooth, flat chest wall contour. Hence, flat closure.

Patient-FriendlyTechnical Term (Synonym)
facelift rhytidectomy
explant total capsulectomy
tummy tuckabdominoplasty
flat closurechest wall reconstruction post-mastectomy
Patient-friendly “colloquialisms” are useful as shorthand for the more cumbersome technical definitions.

Why do we need a new medical term? What’s wrong with the one we have now, “nonreconstructive mastectomy”?

As a medical term of art, nonreconstructive mastectomy is both inaccurate and overly broad. Flat closure falls squarely under the category of reconstructive (rather than cosmetic) surgery because it restores a normal anatomic contour, the chest wall. The term nonreconstructive mastectomy also fails to specify any aesthetic result. Mastectomy only defines the removal of the breast glandular tissue, and the addition of the qualifier does nothing to rectify this problem.

The reality is that patients going flat don’t just expect a mastectomy. They expect an aesthetically pleasing flat closure. And for good reason – almost all publicly available images of mastectomies without breast reconstruction, including NCI’s Visuals Online and Mayo Clinic, depict exactly that – aesthetic flat closure. It is this climate that creates the expectation among patients that an aesthetic approach is standard and that they don’t need to be more specific. But the reality they wake up to after surgery is very different. Our research shows that between 10-15% of patients going flat are left with an egregiously poor cosmetic result that they did not expect. Providers’ use of an overly broad term of art contributes to this problem of mismatched expectations.

There’s a reason patients expect aesthetic flat closure. If you expect the results on the left, and wake up to the results on the right, how would you feel? (Images at left from NCI and Mayo Clinic)

Why does it matter if flat closure is considered reconstructive or cosmetic?

This distinction is not about semantics – it is in fact critical in determining women’s access to care. Most health insurance companies do not cover cosmetic surgery. It was only with the passage of the WHCRA in 1998 that insurance companies were finally forced to cover post-mastectomy breast reconstruction. The law states that its mandate applies to “those who elect[s] breast reconstruction.” Understandably, this is often read to explicitly exclude flat closure. This outcome is in direct opposition to the intent of the WHCRA, which was to ensure mastectomy patients’ access to an aesthetic result of their choosing.

This language deficit and the problems it has produced have led patients to create their own language. The term “flat closure” entered the patient community’s lexicon in August of 2018 with NPOAS’ publication of our article about misaligned financial incentives in the mastectomy setting, “Conflict of Interest for Flat Closure”. This article was published on Facebook in August, and on the website in September shortly after our first Awareness Walk. The term has since been adopted for general use by patients and providers alike, demonstrating its utility.


The current term of art is inadequate.

By defining flat closure negatively, as essentially “the absence of breast reconstruction,” the currently accepted term of art nonreconstructive mastectomy:

  • perpetuates the myth that flat is a second class choice which does not deserve aesthetic consideration;
  • directly puts insurance coverage at risk by defining flat closure as a cosmetic procedure; and
  • is just plain inaccurate – flat closure is reconstructive, not cosmetic.

Durable change requires institutional buy-in. That’s why we have been working with the NCI (National Cancer Institute) to include “flat closure” in their official Dictionary of Cancer Terms. NCI agrees with us that “…a definitive semantic representation of the procedure is important for communication of aspects of clinical care in the patient population with a nonreconstructive mastectomy.” There really is no argument that a unique term of art is necessary for every medical procedure, nor that the existing term of art is inadequate. 


“Reconstructive” vs. “Reconstruction”

The NCI Dictionary defines reconstructive surgery as “surgery that is done to reshape or rebuild (reconstruct) a part of the body changed by previous surgery.” Flat closure clearly falls under this umbrella. So why not use the term “flat reconstruction” or something similar? The reason we do not use these terms is that they do not identify the anatomic contour being reconstructed – the chest wall. The analogous term of art, breast reconstruction, identifies the breast as the anatomic contour. By the same logic, if we are to use the term reconstruction for a flat procedure, it should similarly identify the anatomic contour. Hence, chest wall reconstruction.


Have other terms of art been used to describe flat closure?

Several other terms of art synonymous with nonreconstructive mastectomy can be found in the scientific literature, but they all have drawbacks both in terms of accuracy and specificity. These terms are:

  • oncoplastic mastectomy (link)
  • non-skin sparing mastectomy (link)
  • mastectomy without reconstruction  (link)
  • aesthetic primary closure post-mastectomy  (link)

Oncoplastic Mastectomy

A mastectomy with flat closure falls squarely under the umbrella of “oncoplastic surgery,” which combines oncologic techniques (to remove the cancer) with aesthetic techniques to reconstruct a contour such as a breast mound or chest wall. Using similar logic, flat closure could be called an “oncoplastic mastectomy” because the term specifies the intent (onco- = cancer, plastic = aesthetic). Also along these lines, “oncoplastic reduction” is a term of art currently in use that describes a breast reduction (plastics procedure) with a lumpectomy (oncologic surgery). “Transgender mastectomy” is another example of an intent qualifier – this surgery restores a masculine chest contour for patients whose breasts conflict with their gender identity (notably, this procedure does not necessarily remove all of the glandular tissue).

Non-Skin Sparing Mastectomy

This term has the advantage of clearly describing what additional tissue should be removed during the procedure. However, it suffers from the same problem posed by “nonreconstructive mastectomy,” which is it negatively defines the procedure and does not specifically describe the aesthetic outcome. Lateral (side) tissue for example could be left because it is not “extra skin.”

Mastectomy Without Reconstruction

This term suffers from the same problems as nonreconstructive mastectomy.

Aesthetic Primary Closure Post-Mastectomy

This term somewhat defines the aesthetic approach that patients expect but does not explicitly define flat closure as reconstructive, and could potentially even be interpreted to define it as cosmetic (“aesthetic”).


Flat Closure: Post-Mastectomy Chest Wall Reconstruction

This brings us full circle, to our term of choice – post-mastectomy chest wall reconstruction. It is an affirmative definition, it classifies flat closure as reconstructive, and it defines the desired aesthetic outcome as approximating a breast-free chest wall contour. Its specificity is also an advantage over oncoplastic mastectomy.

Clear language serves the interests of patients and providers alike. It’s time to #putflatonthemenu!