“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.

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Published by Not Putting on a Shirt

Founder of Not Putting on a Shirt, a mastectomy patients' rights organization that advocates for optimal surgical outcomes for patients going flat.

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