My Body, My Choice: Standing up for Women Going Flat
Updated: Feb 4, 2019
By: Kim Bowles | Board Member, Flat Closure NOW & Founder, Not Putting on a Shirt
Breast cancer takes away so much from a woman - her health, her vitality, her sexuality, her sense of self. It erodes her sense of bodily integrity as she must submit herself to poisoning, amputation, and other insults in a bid to kill the cancer growing inside of her. Family and friends can provide support, but she must bear the physical and emotional toll alone. She has no choice. After treatment, if she survives, a woman can recover some of these things - but she cannot recover all of them. The truth is, she will never be the same again. Men also get breast cancer, and undergo much of the same trauma during and after treatment.
The only real matter of choice a patient has in the whole nightmare, is the reconstruction decision. It's the only component of breast cancer treatment where the patient's feelings, opinions, AGENCY, affect the actual experience.
Imagine an advanced stage breast cancer patient agonizing for weeks or months over her reconstructive decision, making sure she has left no stone unturned and that she will be able to live with the result she chooses. Trying to salvage some sense of control over her now unrecognizable body. Imagine her, bald and weak from chemotherapy, facing the amputation of her breasts which once nourished her babies and connected her with her partner. Walking slowly into the surgeon’s office and saying,
“I want to go flat. One surgery. I want to get back to my life, to taking care of my children.”
They discuss how the surgeon will ensure a flat result, and avoid breast remnants left on her chest to forever remind her of what she has lost. She walks out of the office and feels a wave of relief wash over her. She has made her choice - it’s done. Now she just has to survive the surgery.
Lying on the operating table with the IV in her arm, her tears having fallen freely all morning, she thinks of the two young children she may leave motherless as she cedes control to her surgeon. She feels the surgical assistants positioning her body on the table and the harsh light glares down on her, the object of the dissection. And then she hears the surgeon’s words as if in a nightmare:
"I'll just leave a little extra, in case you change your mind."
An overwhelmingly sick feeling turns in her stomach and her head reels. In disbelief, she tries to turn and look at the surgeon. But her head is fixed in position by the hands of the assistants. “No, make it flat!” No response. Everything around her starts to speed up to start the amputation as she begins to feel the anesthetic taking hold of her. Then the room goes black. When she wakes up and looks at her chest, she is devastated to see obvious breast remnants, left there on purpose and against her consent, to facilitate reconstruction she had explicitly rejected. Her decision was stolen from her. Wrenched away suddenly and against her consent, by the surgeon she entrusted with her body and with her life. Her agency quashed, her humanity denied.
It happened to me.
In 2017, at Cleveland Clinic, with a highly skilled plastic surgeon on the team whose only job was to produce a smooth flat result. It happened in spite of the extraordinary measures I took to protect myself - I brought pictures, a witness, and my wishes were clearly recorded in my consult notes. The plastic surgeon said, “We will make you flat.” I trusted him. And he took that trust and threw it like trash to the side of the road.
It took me a long time to accept what had happened. The surgeon lied to my face, and my family was in shock and couldn’t comprehend the truth. Over the next year and a half I fought alone to get justice through the “proper channels” - the hospital, the state medical board. One by one, they shut me down. I slowly learned that no one was willing to take the necessary steps to address the problem and protect patients. I also learned that I wasn’t alone - women are denied a flat result routinely across the nation and beyond. Sometimes it is because the surgeon lacks the skill, and sometimes it's that the surgeon lacks the will - in either case, the patient believes they're going to get a flat result, and they wake up to something completely different. The problem is systemic and change will not happen from within. I realized that I was going to have to take matters into my own hands.
On my last day at the Clinic, I staged a topless sit-in at the CEO’s office, and was promptly dragged out by police. I got this on video, and went public with my story. With the support of my friends, I was back at the CEO’s office two weeks later with a Care2 petition with over 36,000 signatures, demanding that the hospital acknowledge what happened, discipline the plastic surgeon, and change their protocols to protect future patients. Then I founded my organization Not Putting on a Shirt.
Not Putting on a Shirt’s mission is to advocate for satisfactory cosmetic outcomes - as agreed upon by mastectomy patient and surgeon(s) - for those who choose to "go flat." We inform and support patients, demand increased accountability for medical professionals and institutions, and collaborate with patients - and the surgeons who care for them - in our efforts to establish resources and protocols that will make a difference.
We are working day and night from all angles to accomplish our goal. Our resources for patients include:
a downloadable, illustrated brochure to use as a reference when interviewing surgeons
a curated list of flat-friendly surgeons available via email to NotPuttingonaShirt@gmail.com
guidelines up to help recent victims of flat denial to navigate the aftermath, heal, and seek justice
a survey, "Going Flat After Mastectomy 2018,” to gather preliminary data on patient satisfaction with flat closure, to present to researchers
survivor stories from brave women, wise describing their going flat experience in their own words and pictures - both from women whose wishes were respected, and women who were denied flat
articles characterizing flat denial from different perspectives
I am so honored to have the privilege of collaborating with the other advocates at Flat Closure NOW. These women have worked tirelessly to show the world that going flat is a healthy, beautiful, legitimate option that deserves the same respect and consideration as the option to reconstruct. Melanie Testa was one of the first women I saw show her flat scars proudly and publicly - I thought, if she can be happy flat, why can’t I? After I found the private flat support groups, I saw Katie King Fink with her zest for life not altered one bit by the loss of her breasts - she showed me that who we are doesn’t have to change after mastectomy. Catherine Guthrie has been a great friend and ally as well. She listened and heard my story of flat denial and dedicated months of her life to producing her scathing expose on sexism in medicine for Cosmopolitan magazine, which led to our Today Show appearance together. This type of visibility is almost impossible to achieve without a collaborative effort. I’ve followed Emily Hopper’s amazing transformation from breast cancer patient to advocate, community leader, and entrepreneur. I could write a book on how every single board member at Flat Closure NOW has been a source of inspiration and support to me in my own advocacy work.
At Flat Closure NOW, we share common goals and a common vision for how to achieve them. We have so many things in the pipeline for 2019. Together, we are strong. Every advocate’s voice is unique and as we share the table together in good faith, I know that we will see success and facilitate change from the ground up so that future patients will not have to deal with the hardships our generation faced alone.
I will continue to stand up and speak out to protect patients - now with the support of this group of amazing, talented, and committed women.