Pioneers in Flat Advocacy: Catherine Guthrie


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.


Catherine Guthrie

Catherine Guthrie is a women’s health journalist whose work has appeared in dozens of national magazines from O, The Oprah Magazine to Time Magazine to Good Housekeeping. She was diagnosed with breast cancer at age 38 and elected a double mastectomy, rejecting reconstruction in favor of preserving her physical strength and bodily integrity. Her queer, feminist cancer memoir, FLAT: Reclaiming my body from breast cancer, was published in 2018. Catherine appeared with NPOAS founder Kim Bowles on the Today Show to discuss her exposé on flat denial for Cosmopolitan Magazine. Listen to her NPR interview or visit her website to learn more.


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

“Going flat felt like the least barbaric of my options. Because I have a small frame the only reconstructive choice given to me at the time was the Latissimus dorsi flap, which meant severing my back muscle, tunneling it under my arm, and laying it over a breast implant. My other breast was small, so the surgeon advised me to get an implant on that side too, for symmetry. He said most women just wanted to look normal in clothes.”

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

“I am lucky that my breast surgeon respected my choice to go flat and had the skills to deliver. It sounds naïve, but, 11 years ago when I had my surgery, I never for a minute thought my surgeon wouldn’t respect my choice. It’s depressing as hell that I am grateful not to have been violated.”

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

“For me, becoming an advocate was less of a choice and more of an awakening to the deep roots of misogyny in breast cancer care. Everything about breast cancer care orients to the assumption that a woman without breasts is a travesty. As soon as I started seeing how the male gaze shapes breast cancer care, I couldn’t see anything else. As a women’s health journalist, it was (and is) my responsibility to shine a light on it.”

What is your proudest accomplishment as an advocate?

“My proudest accomplishment has been writing an exposé on flat denial published on Cosmopolitan Magazine’s website. A close runner-up was finding out the article was discussed at length at an international conference of breast surgeons. That level of global impact felt amazing, and it never would have happened without Kim Bowles’ bravery.”

What has been your biggest challenge as an advocate?

“Editors’ eyes glaze over the minute you say breast cancer. Getting past publishing’s gatekeepers is a huge hurdle. My biggest challenge is finding and writing stories that grab an editor’s attention and show them a side of breast cancer they didn’t know existed.”

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

“Never stop telling your truth.”

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

“I want parity. I want surgeons to present the option to go flat with the same energy, acceptance, and enthusiasm that they present reconstruction. I want surgeons to stop assuming they know what women want and what’s best for women.

“No surgeon would ever think it was acceptable to sever the Latissimus dorsi of a young man. It would not be done. But it is done routinely on women. Recently, a doctor told me that without a Latissimus dorsi, a person can’t use a walker when they are old or infirm because that muscle is needed to propel the walker forward. Think about that for a minute.”

PHOTOL: Kayana Szymczak for The New York Times

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.


Conference Update

#ASBRS2020 Cancelled – NPOAS Will Attend in 2021

As the world grapples with the COVID-19 pandemic, NPOAS remains focused on protecting the interests of women going flat after mastectomy. We recently saw an important stakeholder, the OPBC, take the historic step of including optimal flat closure in their mission statement. Stakeholder outreach will continue to be a strong focus as we proceed through this year.

The 2020 Annual Meeting of the American Society of Breast Surgeons in Las Vegas, which we had planned on attending as exhibitors, was recently cancelled due to the pandemic. Therefore, we look forward to attending the 2021 Meeting in Orlando, Florida, next Spring. All donations from the #ASBRS2020 campaign will be rolled over to fund our attendance at the 2021 Meeting.

Please contact us with any questions, and stay tuned for updates at the #ASBRS2021 event page!

Pioneers in Flat Advocacy: Charise Isis (The Grace Project)


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.


Charise Isis (The Grace Project)

Charise Isis is the photographer, founder and executive director of The Grace Project, an ongoing series of portraits that capture the courage, beauty and grace of those who have had mastectomy surgery as a result of breast cancer. Charise’s work helps not only those she photographs but the audience who can identify with those figures and hopefully come to see their own beauty when they look in the mirror and see themselves radically changed. The Grace Project has been widely exhibited both nationally and internationally, including features on the Today Show, Bust Magazine, Medical Daily, and more, and recently achieved 501(c)(3) status as a registered nonprofit.


Editor: Because Charise is a flat advocate but not herself a breast cancer survivor, this post is presented as an essay. We honor Charise and her ongoing work.

I am not a breast cancer survivor. I am the photographer, founder and executive director of The Grace Project. The Grace Project is an ongoing series of portraits that capture the courage, beauty and grace of those who have had mastectomy surgery as a result of breast cancer. As such, I have been witness to the physical and emotional scars of hundreds of people across the United States who have had mastectomy surgery. Their bodies are as diverse as their surgical outcomes and I have listened to many stories of both pain and triumph.

I believe that what a person chooses regarding reconstruction after a breast cancer diagnosis is an extremely personal decision. Unfortunately, a breast cancer diagnosis is somewhat comparable to a tornado suddenly sweeping into one’s life. There is little or no time for preparation or consideration. In the blink of an eye, you are under the surgeon’s knife, the  consequences unwrapped after the fact when the surgical bandage is removed.

If I were to experience a breast cancer diagnosis at this time in my life, I would most likely choose flat closure for myself. I can’t tell you this for sure, because in truth, a real decision is made on the head of a pin… but I am a person who has witnessed the widest variety of results, and I’ve observed how people feel about those results and the lingering and ongoing side effects of their decisions.

It is my belief that EVERY surgical option and the physical consequences of those options should be presented to a woman prior to her surgery, and that she should be allowed as much mental space as possible to contemplate those results without the social implications that fall under the personal opinion of a doctor. The doctor needs to remain neutral in the presentation of all options, including, and perhaps especially, flat closure. It is hard enough for a woman to decide what SHE really wants for her own body, let alone factoring in the opinions of her partner, her lifestyle and her body type without the added pressure of how her surgeon, who likely doesn’t know her at all, feels her life would proceed with her given choice.

I have become a voice for the flat closure movement because I inherently feel that women should have autonomy over their bodies. I have heard countless stories from women that I know were not given the option to go flat, or even the option for DIEP flap surgery but were railroaded by their doctors to have silicone reconstruction.

I know women who, upon choosing flat closure reconstruction, were forced to meet with a psychiatrist before being allowed that option, whereas a woman choosing silicone reconstruction was not subjected to the same scrutiny. 

I know young women whose doctors told them that no one would want to date them if they chose to go flat; and women whose surgeons overrode their decision for flat closure and left them with skin-saving fat pockets against their medical wishes “in case they change their mind”. 

I even have a friend who was having excruciating pain with her implants, which were also the type that were being recalled for toxicity. Her surgeon complained that by having them removed and opting for flat closure, she was going to destroy his masterpiece. 

All of this is unacceptable.

Every October, and beyond, we are assaulted with pink ribbons and breast cancer awareness. Let’s face it, there is no lack of awareness in the United States or other developed nations that breast cancer exists. However, having been immersed in the breast cancer world for as long as I have, I’ve become invested in creating awareness around issues that I believe are flagrantly ignored. Issues such as the fact that black women with breast cancer in the U.S. have a significantly higher mortality rate than their white counterparts, or that metastatic breast cancer gets very little funding even though it is the only stage of breast cancer that kills.  Raising awareness for flat closure has become one of the issues that I feel desperately needs to be addressed.

Through my photographs and stories, I have become a voice for my friends, the gorgeous and diverse tribe that is united under the banner of breast cancer. The photographs I share tell stories of pain and triumph and bear witness to the indomitable human spirit and the beauty and grace that lives within… they reveal that we are perfect in our imperfections.

… and my photographs are evidence that a perfect set of breasts do not equal beauty.


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.


OPBC Adds “Optimal Flat Closure” to Mission

A Step Towards Parity

The Oncoplastic Breast Consortium (OPBC) is an independent, international nonprofit organization led by a coalition of world-class surgeons working to bring safe and effective oncoplastic breast surgery to routine patient care. OPBC aims to continuously improve oncoplastic breast surgery by bringing international experts together, promoting high-quality education and performing international multicenter studies.

We are thrilled to report that OPBC has just added “optimal flat closure” to their mission statement, recognizing flat closure as an oncoplastic procedure deserving of an aesthetic surgical approach alongside breast preservation and reconstruction. This is an important step forward towards parity for flat closure.

The Oncoplastic Breast Consortium (OPBC) consists of breast cancer surgeons from gynecologic oncology, general and plastic breast surgery and a strong patient advocacy group. The consortium focuses on oncoplastic breast conserving surgery, nipple/skin sparing mastectomy with immediate reconstruction and optimal flat closure after conventional mastectomy.

OPBC

The Scope of Oncoplasty Includes Flat Closure

Oncoplastic surgery combines oncologic techniques (to remove the cancer) with plastic techniques (to reconstruct a contour – a breast mound, or the chest wall). The initial focus of this field was improving cosmetic outcomes for lumpectomy (also known as breast conserving surgery). A traditional lumpectomy excises the lump and closes the incision without any additional contouring, which can leave behind a permanent “dent.” Oncoplastic techniques contour the remaining tissues to avoid leaving dents (often paired with a symmetry operation on the healthy breast), resulting in better cosmetic result that patients are happier with. (Image: Kronowitz SJ et. al.)

Flat closure is a natural next step for oncoplastic focus. Simply removing the breast tissue often does not produce an optimal flat result, especially for patients with larger bodies and/or breasts (see right). Patients going flat are much happier when their surgical team takes an aesthetic approach, planning the excision and spending additional time contouring to produce a smooth, flat chest wall.

Why Does It Matter if Flat Closure is Considered Oncoplastic?

Categorizing flat closure as oncoplastic surgery counteracts the prevailing myth that women going flat “don’t care how we look” – a notion which contributes to poor outcomes for upwards of 15% of women who choose to go flat. It represents major progress toward widespread acknowledgment of flat closure as a reconstructive choice deserving of an aesthetic surgical approach, on par with traditional reconstruction.

We are proud to support and endorse OPBC’s goal of bringing oncoplastic breast surgery – including optimal flat closure – to routine patient care. And we look forward to continuing to work together with all stakeholders, including the OPBC, to ensure that women who choose to go flat after mastectomy receive optimal surgical results.

“Oncoplastic surgery is integral to all breast cancer surgeries. The use of an aesthetic approach to breast conservation or mastectomy greatly enhances the range of options that can be offered to women with breast cancer and facilitates better outcomes from it. It should be the standard of care.

– R. Douglas MacMillan, Nottingham Breast Institute

Special thanks to the OPBC leadership: patient advocate Jane Shaw, global coordinator Prof. Dr. Walter P. Weber, and the members of the OPBC Study Group.

Share This.

Tell us what you think.

Pioneers in Flat Advocacy: April Stearns (Wildfire Magazine)


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.


April Stearns (Wildfire Magazine)

April Stearns was diagnosed with Stage III breast cancer when she was 35 and her daughter was 3. Prior to breast cancer she worked as a conference producer with a background in journalism. She started a personal blog after her daughter was born and continued writing through diagnosis and treatment. That blog grew into Wildfire Magazine, the only magazine exclusively for young breast cancer survivors and thrivers. Each of the six annual issues focuses on survivorship issues faced by women diagnosed with breast cancer in their 20s, 30s, and 40s – self-care, mental health, body image, (in)fertility, and more. April’s work is guided by the principle that sharing our stories helps us all heal and not feel so alone.


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

“My decision was born largely out of not wanting any more surgeries than absolutely necessary. I had a 4-year-old at the time I was trying to fast-track my life getting back to “normal”  as quickly as possible after breast cancer. By the time I had surgery, I’d already had 6 months of chemo. I was midway through my treatment year and didn’t want reconstructive surgery to slow me down. I had also been told that if I wanted to keep one breast (which I did for the chance of possibly breastfeeding down the road), it would have to be cut to match the reconstructed breast, which I didn’t want to do. Finally, I had heard more than a few stories about implant surgeries that had be redone/fixed and I wanted to avoid that.”

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

“I’m very happy with my surgical result. I have one flat side (left) and one natural breast. I wore a prosthetic breast form for many years (my mastectomy was in 2012) but have, in the last two years decided to just go flat. While the prosthesis was right for the time and it helped my daughter adjust to me not having a breast, after awhile I think it was causing me to feel shame about my body. I was passing as two-breasted in the real world… but not in private? That seemed wrong to me. When I stopped wearing the breast form, to my surprise, my confidence increased. My surgeon gave me a very flat result for which I’m grateful. I didn’t have to fight or argue for this result.”

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

“I’ve always felt strongly about sharing the stories and images of others. In that way, advocacy came naturally to me. What I didn’t realize until more recently was the tool my own body was for advocacy. That by simply allowing myself to be seen as the recipient of a unilateral mastectomy without reconstruction, I was being an advocate for one choice. Now I feel strongly about visibility and that those of us who can, should allow ourselves to been seen because it helps others on their paths. But I came to that more accidentally after I sought to heal myself of body image issues. Even now, I’ve seen images and in person only a few unis.”

What is your proudest accomplishment as an advocate?

WILDFIRE Magazine is my proudest achievement as an advocate, both as a breast cancer advocate in general, as an MBC advocate, and as a flat advocate – and a uni advocate, too! From day one, it has been very important to me that WILDFIRE include all stages of breast cancer. To date, I’ve published more than 500 stories from young women diagnosed with breast cancer all around the world. I’m proud to make this platform available for women diagnosed at all stages, from 0 to IV, to tell their stories as well as read other stories that help them heal. In the years since launching WILDFIRE, it has been my privilege to put many flat women on the cover as well as within the magazine itself.”

What has been your biggest challenge as an advocate?

“Advocacy has introduced me to countless women, many of whom have metastatic breast cancer. I think the biggest challenge for me is losing these women over the years to this terrible disease. I won’t change it for the world, but that is the hardest part of this work. Another challenge is when I hear people (in the community or the public) say being “lopsided” is the worst they can imagine in terms of a chest result after breast cancer.”

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

“Start where you are, start before you’re ready, start small if needed. There is no one way, or one right way to be an advocate. The community needs all our gifts. Speak up and share your story. That’s all it takes to start.”

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

“I just want women to know what their options are because when you don’t know your options, you have done. In the future, I hope more unis allow themselves to be seen. There are so many of us out there but many are invisible. I think the public needs to see us, our daughters and sons need to see us, and other survivors need to see us. We are a hard truth in breast cancer, but the more visible we are, the more the world will see that asymmetrical is quite stunning, too.”


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: Stephanie Astalos-Jones (FLAT Is Where It’s At)


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.


Stephanie Astalos-Jones (FLAT Is Where It’s At)

Stephanie Astalos-Jones is an actor, writer, stand-up comic, teacher, pysanky (traditional Ukranian batik egg decoration) artist, and saw-player from Georgia who chose to go flat after her mastectomy in 2018. Unfortunately, her surgeon left her with an egregiously poor surgical result “in case you change your mind” (his words at her post-op follow up), and she then had to fight to get her revision surgery after the first plastic surgeon she consulted told her that “women can’t be flat.” In 2019, Stephanie started FLAT Is Where It’s At, a podcast for and about flatties where she and her guests discuss the specific problems, weird situations, and wonderful freedoms that we experience living the flat life.


When you were making your reconstructive choice, how did you end up choosing flat? How has your surgical result affected your healing process moving forward?

“As can be seen on the NPOAS site, I wanted flat right away because I had seen a dear friend choose flat two years previously and it made sense to me. (Included is a pic of the two of us now.) Unfortunately, my first surgeon did not listen to me. He was sure I would want implants. And what did he do to me while I was unconscious? Look at that bruising!!! Anyway, I ended up finding surgeons who DID listen to me and I eventually got the flat result I wanted, but only after undergoing more surgery, more anesthesia, more pain, more bills, more recovery time. That’s crazy!”

Stephanie after her mastectomy
Happy with her fabulous revision from Metro Surgical Associates

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

“After a few months, I began to feel that I wanted to do something to help other women. It was clear that we needed to do a lot of talking or even hell-raising to get surgeons to understand that, yes, some women do NOT want implants. (Not to mention implants can actually be damaging.) I had thought before that it might be fun to have a podcast. It suddenly dawned on me that this was the perfect opportunity to create a podcast. You can see a promo for my podcast here.”

What is your proudest accomplishment as an advocate?

“I have to admit I’m pretty happy with the podcast. I meet a different beautiful flattie in each episode. I have gotten email from women who tell me it has really made them realize they are not alone. Also nice is that women who have never had cancer are telling me that they find the interviews very empowering… just as women.”

What has been your biggest challenge as an advocate?

“Some days, when I’m exhausted and busy and facing personal emotional strain, it takes some energy to get an episode made, but I truly love it, truly love the women I meet in each episode, and love what this whole thing is doing for other flatties.”

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

“I have learned that advocacy makes a difference. One person plugging away CAN make headway for others. I would want other advocates to understand that they have the power to make a difference.”

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

“My vision for the future is that when a woman is diagnosed, her surgeon will explain that, if she wants, she can just stay flat and that the surgeon WOULD ACTUALLY BE ABLE TO GIVE HER GOOD RESULTS.”


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: Chiara D’Agostino


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.


Chiara D’Agostino

Chiara D’Agostino is a former ESL teacher and dancer, now a prolific model and flat advocate, as well as a vocal advocate for metastatic breast cancer research. Chiara was diagnosed stage III in 2014, and progressed to stage IV shortly after. She originally chose to reconstruct her breasts with implants but explanted after persistent, repeated infections that were affecting her health and quality of life. Chiara modeled for the 2017 AnaOno + #Cancerland NYFW fashion show benefiting Metavivor, and has been featured in numerous publications over the last six years: Oprah Magazine, Dove’s Real Beauty campaign, Cancer Today, Health.com, the You Run Like a Girl project, and on the LBBC blog, to name just a few.


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

“When I was making my reconstructive choice, I was horrified at the idea of going flat and not having my definition (and most of societies’, six years ago) of a “female form.” I got implants, the teardrop kind that are recalled now, and those implants got infected about six/seven times. The second to last time, my cancer had spread to my lungs and I was still in shock. But the seventh time, I thought to myself “forget these stupid things, I hate the way they look on me anyway, they’re like big rocks. Who am I trying to impress? If it’s others then fuck it!! I’m okay with going flat now – I’ve given it a good try and I can deal with it. I’ll probably feel better once these hard mounds are off my chest.” And in fact I do feel much better without the implants.”

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

“My surgical result now allows me to focus on the rest of the breast cancer that has spread throughout my body.”

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

“I like to stand up for those who feel their voice isn’t heard (or teach them to use their voice), I love to learn, teach, be of service and to travel. As an advocate ties all of these qualities together, and then I share on social media or in person what I’ve learned. In addition, going to conferences gives me hope – I like to be in the conversation. And if I get hope from conferences and lobbying on Capitol Hill and saying “yes” to valid requests to share my breast cancer story, I will, and then they can hear the hope in my story.”

What is your proudest accomplishment as an advocate?

“My proudest are the moments when a survivor, patient or caregiver/family member reaches out to me on social media or in person and I can offer them information from experience, and some comfort.”

What has been your biggest challenge as an advocate?

“My biggest challenge as an advocate is witnessing bullying and competition between the women (I haven’t witnessed this with any male survivors) and learning the balance between tip toeing and speaking my voice.”

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

“Our stories are very important, when lobbying, telling our story to congress and senate makes a difference. When going to conferences, don’t be shy to ask questions. I learned that going to conferences gives me hope, educates me, and connects me with others that can relate or have compassion. I’ve sometimes made friends from conferences and when I go to another conference I’m happy to see them again.”

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

“My vision for flat advocacy is more hopeful now that I’m Not Putting on a Shirt has been born…I believe the message will be spread to surgeons – that being flat-chested is an option and just as beautiful as if one has breasts or implants. Mounds on our chest don’t define us. The media has caught up with demonstrating advertisements of everyday people, so I believe more people that are flat will be showcased.”


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.


“In Search of True Informed Consent” (Wildfire Magazine)

At the Golden Gate bridge on the inaugural International FLAT Day (October 07, 2019)

by Christy Avila, Vice President

Christy Avila is a career educator, mother, and explant and flat closure advocate. She founded the support group Fierce, Flat, Forward, and co-founded International FLAT Day. She has served as the Vice President of NPOAS since November 2019.

Christy tells us more about her article “In Search of True Informed Consent” that was published in the most recent issue of Wildfire Magazine.
“In Search of True Informed Consent” article by Christy Avila for Wildfire Magazine (February 2020)
Becoming an Explant Advocate

A little more than a year ago, I did not know anything about the events that would lead to my being nominated as a “change-maker” for Wildfire Magazine. Nonetheless, I am honored that anyone sees me in such a light.

The first event was learning about Breast Implant Illness. And through further research, I learned so many facts about breast implants in general, that by the end of that year, I knew I would be getting my breast implants removed – or explanted – and that I wanted to advocate for proper informed consent for all women going into reconstruction. I also wanted to help provide support to others who wanted their own implants removed, and to advocate for flat. 

But really, I realized I actually wanted to do more than that.  I also wanted to make the FLAT option more visible, or to #PutFlatOnTheMenu, (which is a term coined by Catherine Guthrie, the author of FLAT), to women being newly diagnosed as well. 

I wanted to help reach them BEFORE they even entered what a dear fellow advocate, Julie Van Heuklon, calls “The Reconstruction Highway to Hell.” Sadly, there are too many of us survivors, of all ages, who can relate to that “highway.“ And even more sadly, there are new women unwittingly being set out on that “highway to Hell” on the daily. 

I really wanted to work to change the culture around the flat option as a whole, (including the lack of discussion about it as an option in the first place), to the propping up of reconstruction as being an important and critical part of our “treatment,” and for FLAT (as a reconstructive decision) to be honored and revered as a legitimate and worthy choice. And then for that choice to be treated with respect and care by surgeons, doctors, family, and friends.  

Finally, I wanted to find ways to promote the flat choice as beautiful, fit, sexy, satisfied, proud, content – whatever positives it may be for that individual. But, to promote all the good things FLAT can be, and all the good things flat is.

#FlatFire

Last year there were three major things that I feel have contributed to what I call the “flat fire,” that is now burning inside of me.  And much like a “WILDFIRE,” that is the name of this very magazine publication I am featured in, it is something that I hope spreads far and wide – and at a very rapid pace. 

In my mind, the more quickly that #FlatFire spreads, then the fewer the number of women who may have to endure similar pain and suffering to what many of their breast cancer sisters before them have had to endure.

This pain and suffering can range from experiencing some symptoms of breast implant illness, to full-blown severe, bed-ridden breast implant illness, to just the general pain and suffering that often comes along with reconstruction, including having various infections, to having multiple surgeries, to living with the pain of capsular contracture, or with the  “side effects” from the reconstruction itself.

Making a Difference for Women

The three things I have tried to do to affect a change in the breast cancer world that I am optimistic have helped us set the stage for 2020 are, 1) testifying at the FDA Hearing on Breast Implant Safety in March, 2) creating the support/advocacy group “Fierce, Flat, Forward,” and finally, 3) co-founding the creation of “International FLAT Day,” which has its worldwide inaugural celebration on October 7, 2019. 

Christy testified at the FDA hearings in March 2019

First, there was the FDA Hearing in Washington DC in March, where  unknowingly, there was exposure gained that led to other interviews and to being quoted in the New York Times, Yahoo Lifestyle, and most recently, a new first-of-its-kind in-depth report out by BreastCancer.org.

This exposure provided a visibility and a level of credibility that I had not really anticipated going in, but that I am ever grateful for, and so thankful that something pushed me to force myself to do it despite my fears and reservations.

Around the same time, through my involvement in the group Breast Implant Illness and Healing by Nicole, which I credit for setting me on the path toward my explant, I came to recognize that there was a very desperate need for other breast cancer survivors, like me, who are now learning about breast implant illness and/or moving toward getting their own breast implants removed for one reason or another. 

Finding Support, Providing Support: Fierce, Flat, Forward

This led to a second important   project being started, which was the creation of the group “Fierce, Flat, Forward.” I founded this group in hopes of creating a safe space to help offer guidance, support, encouragement, and inspiration to other women going through what can often be an extremely scary and re-traumatizing, newly shocking, and heartbreaking experience for us. 

The group, founded less than a year ago now, has quickly attracted almost 1,500 members and it continues to grow daily. There is an essential and critical need for this “safe space,” and I am honored and humbled to have created it and so touched each and every time I read of the relief and solace it has provided to another person.

I see something that I myself so desperately needed as I moved through my own discovery of Breast Implant Illness, and learned of all the information out there on breast implants as medical devices, and of our immune system’s response to having large foreign bodies inside of it – like breast implants. 

The group, Fierce, Flat, Forward, is also open to those who went flat at the time of their initial mastectomies(y), since they invariably provide unspeakable amounts of support and inspiration to newcomers, as well as to those who are newly exploring “going flat,” in addition to those who have already gone through reconstruction. My experience in the group so far has simply been an amazing one as we all come together with our various journeys to share.

I continue to be humbled and inspired by what I witness and experience there on a daily basis. And my reward is knowing that so many others have been helped and feel the same way. 

I am very passionate about the FLAT message we have to spread and about helping others who are passionate about spreading that same message to as large of an audience as possible.

Celebrating Flat: International FLAT Day

And finally, I would say my final effort towards changing-making took place when I co-founded International FLAT Day, with Robyn Towt, and then created and helped to launch, with a handful of other advocates, the very first “International FLAT Day.” 

International FLAT Day is October 7th

International FLAT day was created to spread breast reconstruction awareness and to promote FLAT as a worthy and beautiful reconstructive choice on a worldwide level. It was a day designed to bring attention to, and to celebrate, FLAT.

The premier day was well-received in multiple countries with initial success, and it’s exciting to look forward to even bigger and better things ahead in 2020–as word spreads like “WILDFIRE” – or maybe more like #FlatFire. 

Moving Forward in Advocacy

Still, these three “change-making” efforts are really just the embers to the flame. There  are other exciting things in the works, like aligning with incredible advocates, that fill me with hope, optimism and excitement as we continue to move FORWARD in 2020! We are paving the way for others, for our sisters, to follow.

All in all, I recognize that there is still so much work to be done for the breast cancer community, and for the flat community as well. I mean, I haven’t even gotten into “flat denial” yet, which far too many of us experience when making flat closure the choice for ourselves.  

Nevertheless, I am still so very optimistic to have the force of so many incredible and powerful women coming to the forefront all around me. I am honored to walk in their presence, and excited to bear witness to their stories, and to see the love, kindness, strength, and support they offer others. 

I am truly looking forward to seeing the  #FlatFire continue to grow – and for it to keep on burning bright – lighting the way for all those who come behind us.


Share This.

Tell us what you think.

Empowering Patients with a Bill of Rights

Bill Of Rights by Nick Youngson CC BY-SA 3.0 Alpha Stock Images

The Goal: Optimal Patient Care

A cancer diagnosis is a harrowing experience. The patient must process a deluge of information and trust their medical providers to help them make the right treatment choices.

But not every patient gets the best guidance, or the best care. Disparities exist, and oftentimes, the patients most in need of informational and community support to help them advocate for themselves, are the very patients who can’t access it.

Because breast cancer afflicts one in eight women, the scale of the impact of even small improvements in breast cancer care can be enormous. Providers, patient advocates and other stakeholders have been working on this for decades. Their work continues today.

Europe Sets the Example in 2014

In February of 2014, on World Cancer Day, the European Cancer Patient’s Bill of Rights was unveiled. The initiative was spearheaded by the European Cancer Concord, a coalition of patients and providers in the EU. It aimed to address disparities in cancer care to ensure optimal patient outcomes across Europe, and was based on three principles:

  1. Patients should receive the most accurate information and should be proactively involved their care (i.e., shared decision making)
  2. Patients should have optimal and timely access to evidence-based, appropriate, specialised care
  3. Health systems should ensure all patients receive the best possible cancer care from diagnosis through survivorship, and should focus on continuous innovation and improvement

For patients facing mastectomy in particular, these principles should guide not just their oncology care but also their reconstructive surgical care – to ensure that every patient enjoys full and fair disclosure of all of their options, has their values and priorities factored into their treatment plan, is able to access appropriate and evidence based specialized (oncoplastic or plastic) care, and receives optimal surgical outcomes to ensure they enjoy the best possible quality of life moving forward. To recap:

  • Full and fair disclosure
  • Shared decision making
  • Access to plastics
  • Optimal surgical outcomes

… sounds like something flat advocates can (and should) get behind!

Oncologists in the U.S. Lead the Way in 2020

Providers in the US are now following Europe’s example. A coalition of leading oncologists and researchers recently published their own proposal for a Cancer Patient’s Bill of Rights based on similar principles, in JCO Oncology Practice (Feb 2020):

Proposing a Bill of Rights for Patients With Cancer,” JCO Oncology Practice (Feb 2020) – Dr, Joseph O. Jacobson, Prof. Leonard L. Berry, Patricia A. Spears, Dr. Karina Dahl Steffensen, and Dr. Deanna J. Attai

Of particular interest to patients facing mastectomy and considering their reconstructive options is the proposal’s principle of equitable treatment – including “the right to balanced information about treatment options, provided in understandable language, that takes into account their priorities and values.” These three components – balanced information, clear language, and shared decision making – are critical to achieving parity for flat closure.

Balanced information in the mastectomy setting means that surgical options are presented in a fair and unbiased manner, without the provider’s personal opinions unduly influencing the communication. Comments such as “you’re too young to go flat,” “you’ll change your mind,” and “you’ll look deformed” have no place in this paradigm. Nor does omission of flat closure as an affirmative choice.

Providers must offer the option to go flat as an aesthetic option. Clear language is fundamental in medicine, and that’s why we believe that the term “flat closure” should be adopted by providers – to ensure patients understand that going flat is an affirmative, viable, aesthetic choice worthy of the same respect and consideration as other reconstructive options.

Lastly, treatment decisions must take into account the patient’s priorities and values – this is another way to describe shared decision making. If the patient prioritizes being “one and done,” this should be a factor determining how the surgery is planned. To this end, plastics closure should be considered when indicated.

Empowering Patients

The proposed Bill of Rights aligns perfectly with our core values, in particular, full disclosure, shared decision making, and evidence-based medicine. It will be a tool to empower patients to demand a better standard of care as well as a means to for that standard of care to be broadly and uniformly implemented.

Thank you to Dr. Jacobson, Prof. Berry, Ms. Spears, Dr. Steffensen, and Dr. Attai for being a voice for patients!

Dr. Joseph O. Jacobson
Dana Farber
Prof. Leonard L. Berry
Harvard
Patricia A. Spears
Dr. Karina Dahl Steffensen
University of Southern Denmark
Dr. Deanna J. Attai
UCLA

“We believe that every patient has the right to receive the best possible care that aims to achieve the best possible outcome.” (Jacobson, et. al.)

We couldn’t agree more.


Share This.

Tell us what you think.

Pioneers in Flat Advocacy: Beth Fairchild


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.


Beth Fairchild

Beth Fairchild is a mother, tattoo artist, and strong advocate for both reconstructive choice and metastatic breast cancer (MBC). She has been living with MBC since her de novo diagnosis in 2014. Beth initially decided to go flat after her mastectomy to protect her treatment timeline and options. After three years with stable disease, she decided to pursue implant reconstruction.

Beth served as the President of Metavivor for three years, continuing to serve on the Board today. She is the creator and producer of Metavivor’s #ThisIsMBC initiative, and is also a Director of #Cancerland. Beth was the first MBC patient to be featured in Glamour, and has also been featured in Oprah Magazine, the Today Show, A Story Half Told, Third Love’s #TheUnderneathProject, and more.


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

“I chose to go flat, as a de novo MBC patient, due to the risk of complications that could arise from reconstructive surgery, and the implications that any complication could lead to prolonged discontinuation of treatment, thus leading to progression or recurrence of my metastatic disease.

After three years of living with my flat chest, and 5 years of completely stable and quiet disease, I chose to reconstruct my chest. I was frustrated with clothing options, especially when trying to buy lingerie, and having to have everything altered. My DD breasts had been a huge part of who Beth was before cancer, and I wanted to feel what that was like again, even though I chose much smaller breasts for reconstruction.”

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

“I had to advocate for my mastectomy, and when I got it I was thrilled. I traded up once the first time I saw my flat chest after removing the bandages and never looked back. I was happy. I felt just as sexy and feline as ever without bulky breasts weighing me down. Most of all, I felt free of any BC that could have been lurking in that tissue, feeding distant metastasis. 

Now, with my new breasts, I feel equally as sexy and feminine, AND I can buy a bikini, shirt, or any dress I want off the rack and wear it with confidence. I enjoy buying sexy lingerie and looking at my curves in the mirror. 

The bottom line, I think, is that you have to feel good about whatever choice you make, and that feeling good is critical for having and maintaining quality of life.”

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

“I’m not sure I decided to be an advocate as much as advocacy found me. I just started sharing my experiences and people listened, they were intrigued, and it just started snowballing there. I think once I realized how great it felt to help others I was hooked. It’s a wonderful thing to be able to say to someone who’s frightened and assure, “I’ve been where you are now and it’s going to be ok.” There were so many women who were that for me when I was first diagnosed and now I get to be that guiding light for others. “

What is your proudest accomplishment as an advocate?

“My proudest accomplishment as an advocate is probably my work at METAvivor as part of #Cancerland, walking the runway at NYFW without breasts. Being able to carry forward my friends Champaign Joy’s legacy and know how proud she would be of all us. “

What has been your biggest challenge as an advocate?

“The biggest challenge for me honestly is the infighting. Women can be mean and catty and judgmental, and it seems even more severe when they’re hurting, ie after a BC diagnoses. It’s sad to me that my lifestyle, my tattoos, my choices to go flat/reconstruct have been examined under a lens clouded by others people’s personal experiences and that I have been included or excluded based on those opinions. And it’s not just me,  UT I see it happen with lots of other women and men and advocates in this space. This is a time, especially during cancer and treatment, when we should be rallying for another, cheering one another on, not being divisive.”

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

“I’d like other advocates to know that your story is just as important as anyone’s. If you can learn to share that story in a positive and impactful way, by doing so, you can change the life of others, an entire community, an entire industry. Never underestimate the power of the spoken word.”

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

“First, I would like to say, just because I ultimately chose to have reconstruction, I am still very much an advocate for the flat movement. While I want to educate people about my experiences, I’m not advocating for women to choose implants, but for them to make more informed decisions about reconstruction.

I wish women were offered flat as an option. It’s like once you’re diagnosed with early stage BC, you’re placed in an assembly line and you’re bouncing from doctor to doctor and just trusting them to make the right choices for you. Most breast surgeons don’t offer all the options for reconstruction, just implants. Remaining flat should be viewed as normal as implants, DEIP, TRAM, etc. I’ve learned so much after being flat and now having reconstructed breasts, and the only thing I know for a fact, is that there is no right or wrong when making the choice about reconstruction, there just IS. The key is realizing that you have options and the choice is YOURS, and that patients have the right to be informed of every single option available and be free to make that choice.”


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!

Share This.

Tell us what you think.


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.