Hello, Kimberly! I’m Cassandra & I’m a breast cancer survivor. I had my bilateral mastectomy in 2013, followed by chemo & radiation. My surgeon was a woman, and I thought she would understand. She didn’t listen. I have an added element in my story; my surgeon was also a Lieutenant Colonel in the US Army. I’m a veteran of the Air Force & Army. I’m also a 100% disabled veteran.
After seeking medical attention from the VA Medical Center, I was sent to a military base for treatment. (I was given no choice.) I explained over & over again that I did not want reconstruction. “Please make me flat. I don’t want anything in my body that shouldn’t be there.” I already had four tumors that needed to be removed, and they certainly shouldn’t be there.
I ended up with extra skin, or dog ears, “in case you change your mind.” It was bad enough I was losing my breasts, but to have this ugly, bumpy chest afterwards was not okay with me. I believe it was the following year when I found the courage to request a revision. The plastic surgeon to whom I was assigned was an old retired doctor that did some work at the military hospital. He didn’t listen to me at all. He even forgot who I was from the time we had our consultation to the time of surgery. Although the dog ears were removed, I ended up with worse scarring. They were hypertrophic. It was awful! I then had Kenalog injections.
I don’t like seeing my chest. I still have some pain in some areas. I do not want more surgery.
Editor: For women who initially chose implant reconstruction, and are dissatisfied with their implant experience (there are multiple reasons this may happen – pain, infection, capsular contracture, skin healing issues, implant migration, etc.), the next step is to remove the implants. This procedure is called “explant.” After explant, there will almost always be significant excess skin remaining, and if the surgeon does not remove it, the patient is left looking “deflated” which for most women is an absolutely unacceptable result. Removing the excess skin takes time and skill. Women who choose to explant are no less deserving of a decent flat result, than women who choose flat from the beginning. As competent adults, women are allowed to change our minds FOR ANY REASON, and surgeons are duty bound to respect our wishes. Our bodies, our choice.
I had been diagnosed with hormone driven breast cancer on August 5, 2017. I had a double mastectomy with immediate reconstruction which cause me nothing but pain and discomfort even after the implants were put in. I couldn’t take it anymore, constant pain and got extremely frustrated after just 8 months of having them so I chose to have them removed!
The insurance company tried to deny this surgery on the grounds I did not meet two criteria: the implants were not leaking, and there was no infection, But my plastic surgeon told me it would be covered under “revision”! He got the notice from them the day before my surgery and I received the notice the day AFTER! Well, he fought with them and overturned that decision. However, I am not happy with the cosmetic results!
He made NO ATTEMPT to remove any leftover skin and I look like my tits have just been deflated! Well, after
sending a scathing email to my nurse navigator, which she in turn shared with the plastic surgeon and her administrator, the plastic surgeon’s office called me the very next day to bump up my appointment to next Tuesday. He wanted to see me right away but the scheduling as not conducive to my schedule.
[To the left] is a picture of how I look currently. Let’s keep sending this important message to both the surgeons and insurance companies! These results are completely unacceptable!
Following are links to all NPoaS resources and media coverage that give the background of what we’re about, how to connect with us on social media, share your story, and support the work of Not Putting on a Shirt.
Our Mission
Our 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.
The Problem
Patients’ Wishes Versus Surgeons’ Choices When a Mastectomy Patients Opts Not to Have Reconstruction (or When Reconstruction Fails to be an Option)
The Daily Mail has picked up the story. Says Kim: “There’s one inaccuracy on my cursory reading of it, which is that I met with the CXO (Chief Experience Officer, Adrienne Boissy), not the CEO. That meeting produced absolutely nothing but platitudes and an empty tank of gas (it’s a 5-6hr round trip for me).”
Women in the World is a digital platform in collaboration with the New York Times, that features news and commentary.
Kim’s demands and Cleveland Clinic’s response on 7/30/2018
Kim’s August 2018 Letter to Highmark Insurance requesting that they rescind Dr. Bernard’s reimbursement, on the grounds that she did not consent to the procedure, and additionally, his actions necessitated an additional surgery for which they will foot the bill.
If you have “gone flat,” we’d like to hear your story. Complete the survey, send us a picture, or tell us your story.
Your participation in the “Going Flat” After Mastectomy Survey will help us understand what is happening to patients like you, what works well, and what needs to change. Go here to get your code to participate in our survey and data collection. Participants may provide as much or as little information as they wish.
Share your story in photos or in your own words (or both). Email us (NotPuttingonaShirt@gmail.com) and we will publish your story on our website (which is still in the works) and social media. Submissions can be anonymous or we’ll use as much of your name as you’d like.
NPoaS in Social Media
‘I wanted to be FLAT’ Facebook support group for women with unsatisfactory cosmetic outcomes
Donations Not Putting on a Shirt was founded in June of 2018. Our future efforts include gaining 501(c)(3) tax-exempt status; however, currently, donations are not tax-deductible. Donations in support of our work may be made in the following ways:
All of the information you will need is on this page. It includes where to park, important times, and walk route. Please print it or bookmark it and refer to it with any questions on Walk Day.
Start at Fairfax Park, near Quincy Avenue and 83rd Street, Cleveland, Ohio
12:30 Sign-in – 1:00 Walk begins – Lunch to follow (about 2:00) – Finish by 4:00
If you haven’t yet registered for the walk, but would still like to come…
No problem!
Come to the sign-in table on walk day and you can register then. We still have t-shirts available in most sizes.
Registration options are:
$10- Walk only; no t-shirt or lunch
$20- Walkers who are getting a t-shirt; no lunch
$20- Walkers who are getting lunch; no t-shirt
$30- Walkers who are getting a t-shirt and lunch
Sponsorships are still available! Please do not let registration fees deter you!
Direct all questions to NotPuttingonaShirt@gmail.com.
If you want to show your support, but can’t make it to the walk, join us virtually.
Share your photo on Facebook (@NotPuttingonaShirt), Instagram (notputtingonashirt), or Twitter (@not_shirt). Your options are to show your flat mastectomy result, wear your Not Putting on a Shirt t-shirt, or use your own sign or t-shirt.
We are welcoming photos starting now, but ask as many people as possible to participate during the walk next Saturday, September 8. That’s 1:00 Eastern time (12:00 Central, 11:00 Mountain, and 10:00 Pacific).
Your participation sends a message.
Women are capable of deciding whether to go through the breast reconstruction process or not. A flat cosmetic result is good outcome following mastectomy, for women who choose it.
When a woman chooses a flat result, her surgeons should provide the best cosmetic result possible.
A satisfactory flat result is possible. If a surgeon is not committed to creating a smooth, flat result, she or he should refer the patient to a surgeon who will do the job well.
It is egregious for a surgeon to leave pockets for implants, when a women has asked for a flat result or stated that she does not want reconstruction.
We are committed to changing the system that allows surgeons to disregard patients’ wishes.
Flat chests and chests without nipples are not obscene. (We’re looking at you, Facebook.) Women deserve to share their stories through imagery. Women deserve to learn what to expect through imagery. Women deserve to be proud of their changed bodies and to show it out loud.
Share in the comments here or on Facebook. I’m certain I am forgetting some points.
Some cosmetic results for women who had requested a flat result or said they would not have breast reconstruction:
I am 8 months out from a prophylactic bilateral mastectomy, which I chose to have due to a BRCA 1 mutation. Before my surgery, I joined the FB group Flat & Fabulous, and seeing how many women’s requests to be made flat were ignored made me very worried. I must have sent my surgeon 10+ messages explaining that I wanted to be made as flat as possible, and I sent her many photos of what I deemed to be acceptable and unacceptable results. I also consulted with a plastic surgeon prior to my mastectomy, and while he did not participate in my actual surgery, he did ink me up with permanent marker the preceding day, to provide my breast surgeon with some guidance. I specifically requested a “gull-wing” scar pattern (you can make such requests!) because I find its curviness aesthetically pleasing, and because I can wear lower-cut shirts without showing my scars if I feel like being sassy but not *too* sassy, lol.
I am very pleased with my results. I did have minor revision surgery under sedation 6 weeks ago to minimize some lumps I had on my side, but I think my surgeon did an excellent job, overall. For what it’s worth, I wore a 36G bra before mastectomy, so the excuse that a surgeon can’t make a woman flat due to their chest size doesn’t hold water. It isn’t wise to expect a “perfect” post-mastectomy result (medicine is an imperfect science, and closing a round opening with a linear seam is tricky), but we should be able to expect acceptable results.
I was one of the lucky ones…I had a surgeon that cared about the cosmetic results. My chest is flat and my scar barely visible. She was a breast cancer surgeon…that’s all she does. A plastic surgeon would have been involved if I had elected reconstruction.
She told me a story about her residency with a male surgeon. Near the end of her residency he offered her a job…he would do the surgeries and she could close them…because her closings were so good.
She turned to him and politely said no…then she told me that she worried about what kind of job he was doing on the inside if he didn’t care what the outside looked like.
As a surgical student she spent extra time learning how to close an incision and give her patient the best possible outcome. I am thankful that she cared….that she cared enough to perfect her technique so I could look at myself and be happy…so my husband could look at me and be glad that I survived and look good too!
I wasn’t prepared for how painful it would be for me to be the one to hear of a woman’s experience, while it was still so raw for her. While it breaks my heart, knowing this happens motivates me to do the work to try to keep it from continuing to happen. Here’s Shelly’s story, with photos at the bottom:
I am 5 Days post explant [removal of breast implants] and I am so upset that my surgeon left lots of extra skin. It looks like he just took out implants and that’s it. I was wanting to know if I can buy a shirt to support this cause.
Later:
I was a ten year survivor when the found LCIS [an abnormal cell growth that increases one’s risk of invasive cancer in the future] in my other breast. I had put up with a sh***y recon job for 10 years and just wore a prosthetic. I thought, ‘OK here is my chance to get everything fixed,’ and now this. I think I am going to go back to my breast surgeon eventually and see if she can fix it. She isn’t a PS– just a surgeon. In the meantime I will heal and let this Dr know that what he has done is unacceptable. I have already had two surgeries in six months so not ready for anything more just yet.
I asked Shelly if I could share her messages. She agreed, and also sent pictures, showing how her chest looks 5 days after surgery, which her surgeon was supposed to remove implants and leave her with a flat result:
Upright
Leaning forward
6 days post explant:
I am back to work today feel fine except a little sore. Lol. I guess I would rather not show my face at this point but you can use my name.
I was surprised that she was back at work so soon:
I had surgery to explant last Tuesday; he took dressing and drains out Friday and said I could come back to work to day. I guess because I have a desk job.
When I asked her whether he knew she wanted a flat cosmetic outcome :
Yes he knew I was done with trying reconstruction and wanted to be flat. I even asked him to try and eliminate some of my under arm boob lol. So he said he would have to make the incision longer, and I said I didn’t care. He did do that, I believe. He told me to wear a sports bra 24/7 until I see him again so I guess he thinks the skin will tighten up. I am doing what he asked and will be expecting lots of answers when I go back. I wish I had just went back to my breast surgeon I believe she would of done it right, but I guess I thought I should use a plastic surgeon. That was my error. I don’t think they are experienced enough at doing the flat thing. I am in the flat and fabulous group they are wonderful ladies! I have cried off and on since dressing came off. It comes and goes. I feel grossed out when I look at it and disgusted. I guess what I am feeling feels like grief. I am sure it will pass eventually and I will be very mad. I am usually pretty good at speaking my mind. Lol
Our shirt printer is giving us a deal that we are passing along to you. If you order by the end of the day*, Friday, August 10, adult sizes Small-3X and Youth sizes XS-XL are $20 shipped or $15 for pickup at the walk. Shirts will come in the colors and fiber content the printer has available. So… if you want a particular color or fiber content (either 100% cotton or 50/50 cotton/polyester blend), let us know, and we will provide it if it becomes available. We cannot guarantee availability of your preference, and we won’t know what we are getting until we get it.
Registering for the walk? All registrations by the end of the day, Friday August 10 are $5 off. Those who have already registered will also receive this discount!
Use the same form to order t-shirts or register for the walk. Order/register online or print the form and send it to us with your payment. If you are only ordering t-shirts, only answer the questions that apply to t-shirt orders.
If you place your order by the end of the day* (11:59 PM) Friday, August 10, pay only:
$30 $25 per full registration
$20 $15 per lunch-only registration
$20 $15 per t-shirt to be picked up at event
$25 $20 per t-shirt to be delivered
$10 $5 to register for walk only (no lunch/no t-shirt)
$5 $0 Children under 3
*If you are sending your order by mail, please send us an email or Facebook message by the end of the day August 10 to let us know. We have to place our shirt order with the printer then, in order to get the discount we are passing along to you.
Show your support by sharing a photo of you wearing a Not Putting on a Shirt tee, on Facebook or Twitter, on our walk day, Saturday, September 8, 2018.
This is the story of how Kim Bowles, an introverted, but bold, scientist and mother of two toddlers, ended up protesting topless on a sidewalk in Cleveland. This is why you should walk with us on September 8, 2018. (Author: Amanda Newill)
While chemotherapy ravaged her body and she was waiting for her mastectomy, Kim researched her cosmetic options. Many women choose breast reconstruction, but Kim decided to forgo reconstruction and “go flat.” This would allow her to have a single surgery and would minimize recovery time, so she would not miss any more of her babies’ little years. During a long consultation with Dr. Steven Bernard, the plastic surgeon recommended by her breast surgeon, Kim shared pictures of her desired cosmetic result.
She remembers Dr. Bernard saying, “I will make you flat,” and he noted in her record that she wanted “a smooth, flat result.” She believed she was in good hands.
Kim tells of the day she had her mastectomies. “Can you picture this? I’m on the operating table—bald from chemotherapy, with the IV in my arm—and I heard him say, ‘I’ll just leave a little extra in case you change your mind.’ And I said, ‘No! Make it flat! I just want to keep my range of motion….’ And then I conked out….”
At first, everyone tried to reassure her that she had obtained the result that she wanted, which made her question her own eyes—and her mind. Does she look flat to you?
Kim knew it was too late for her. She would have to find a way to live with this result, which she felt was intolerable; or she would have to take more time away from her family (as well as take on more risk and more expense) to have further surgery.
Kim pleaded with Dr. Bernard’s hospital, Cleveland Clinic, to address her concerns, acknowledge what happened, and discipline Dr. Bernard. She reached out to the hospital ombudsman, CEO, chief experience officer, plastic surgery department head, and medical ethics department, and then the state medical board, the Society of Plastic Surgeons, and a malpractice attorney who told her, “The jury will just hear a woman complaining about a cosmetic result, when the doctor saved your life.” [Dr. Bernard, in fact, did not perform any of the lifesaving cancer removal; that was the breast surgeon, who did a fine job. Dr. Bernard’s only job was to make Kim’s chest smooth and flat. And, the core issue of her complaint is patient consent and her right to bodily autonomy, not aesthetics.]
When she couldn’t get results after making countless phone calls and sending myriad letters and emails, Kim protested topless—by herself!—at the CEO’s office at Cleveland Clinic. She took her shirt off again for an entire day on the sidewalk outside of the hospital. From those efforts grew her organization, Not Putting on a Shirt.
Kim’s determination to have her wrong righted—by acknowledgment, apology, and formal change in hospital procedures— continues to grow as she hears story after story of similar things happening to other mastectomy patients, many of them in poor health, due to cancer. Often, they are in their sixties and seventies. Some don’t even live long enough to have a chance to stand up for themselves.
For all of these women, for Kim, and for every mastectomy patient in the future who decides that breast reconstruction isn’t for her, we will walk. Men and women who have never had a personal experience with cancer will walk with women with scarred chests, some of them bare.
You are invited to walk with us on September 8, 2018. The Not Putting on a Shirt main walk and lunch event is in Cleveland, and, with our help, you can coordinate a walk in your town or city.
Pictured: Walkers will get Not Putting on a Shirt t-shirts in a variety of colors. Shirts are also available for mail delivery. Note: Website is not up and running, yet.
We will stand together so that awareness will grow; so that women will get the best information and support possible, before and after surgery; so that medical professionals and institutions will be held accountable when bodily autonomy is violated; and so that patients and surgeons will share decision-making in a way that helps surgeons provide the best care available for each patient.
I’ll finish with Kim’s words: “We have strength in numbers on this. It’s easy to dismiss one woman standing on the street with a sign. It’s much harder to dismiss a group of people supporting each other, walking together. I know we all have very busy lives. My two- and five-year-olds would certainly rather I stay home with them so they can climb on me and scream at me… And I appreciate any time that any of you are willing to give towards this cause. I spoke to a woman last week who had this bait-and-switch happen to her, and she will never be able to get it fixed, because she is stage 4 (terminal) and too weak from ongoing chemotherapy to survive another surgery. Can you imagine? This s*** has to stop.”
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