Brenda – “I should not have to feel embarrassed or humiliated by my own body, ever.”

Editor: Brenda’s story really shows what an impact we can have when we go public with our stories.  Breast cancer treatment is an extremely isolating experience. But now that we have flat advocates like Melanie Testa, Beth Fairchild, and others – now going flat is beginning to be normalized.  People are starting to realize that it’s ok not to reconstruct. And that as patients, we have the right to expect high-quality surgical care and a reasonably flat result. We don’t have to accept the “Bernards” (extra tissue) that so many women have been left with.  We deserve better.

Unfortunately for Brenda, even though she had expressed her wishes with crystal clarity to her surgeon… she was still left with lots of extra tissue.  It took her three surgeons and several surgeries to finally get the flat result she wanted. She experienced paternalism and disrespect at every turn, not only with her breast surgery but also prior, during her biopsy.  Even though she, like myself, “did everything right.” But she didn’t give up.

This has to change.  Women should not have to take extraordinary measures to get a reasonable, tolerable surgical result that they can live with.  Women deserve better!


Hello. I’m genderqueer (and have been since childhood). I got breast cancer 2 years ago, at age 45.

My cancer was located in the nipple of the breast and radiating out in a spider web fashion. It wasn’t the usual lump and went undetected at my last normal examination only months before. The first symptom I noticed was the nipple inverted and began to pull in. Within a month I had a lot of pain, swelling, and redness. The breast had deformed. The pain got worse as I waited for biopsies and the results, MRIs, mammograms, and X-rays. I couldn’t wait for surgery! I wanted the pain to end and I wanted that cancer gone. I wanted that breast OFF.

And I knew that I could ask for a flat result, thanks to the advocacy of Melanie Testa, whose pictures I saw long before cancer even became an issue in my life. So I strode confidently into the surgeon’s office and told him exactly what I wanted. Since my insurance would pay for a double mastectomy, I decided to look on the bright side: I was getting the “top surgery” that I had always wanted but could never afford. That was and still is, a little silver lining to the dark cloud of disease.

I was nervous before surgery and had to be sedated. I’ll admit, the morning of my mastectomy, I wasn’t at my best. Shaking like a Chihuahua! I was worried that it might hurt! But they took such good care of me, they truly did. They brought me blankets and pillows to keep me warm and they did the dye thing so they could check my lymph nodes. When I woke up, I felt fine – not nauseous like I usually do. I couldn’t help but pull the dressing back right away as soon as I could move my arms. I wanted to see my flat chest!

What a disappointment. The first surgeon left me with loose skin sagging down over my belly, and a portion of my right breast sitting at the center of my chest. He assured me that the extra tissue would “pull in”, but it didn’t. I had these weird, lumpy, “proto-breasts” that hung down. It was an ugly and frankly a humiliating result. A year later, after chemo and all the treatment was done, I was embarrassed by the appearance of my torso. I looked like I was wearing the human skinsuit that “Buffalo Bill” was working on, and he hadn’t got around to finishing the breasts yet.

I went to one plastic surgeon, Dr. Matthew J. Fox in the Dayton, Ohio area to ask about scar revision and chest sculpting. He assumed I wanted implants, and I flatly told him that I did not. He kept asking me “Why?” in this authoritarian, paternalistic kind of way, in a tone that suggested he was really wanting to ask me, “Are you mental?”  I did not go back, and I’m afraid I can’t recommend him.

Later, I consulted with a different surgeon, Dr. Ettinger of the Beavercreek Plastic Surgery Center in the Dayton, Ohio area. He listened, did not try to tell me what I wanted, and in a series of surgeries was able to fix what the first surgeon had left behind.

I have mixed feelings about the first surgeon. He basically saved my life. He removed the cancer that was sure to kill me otherwise. He didn’t talk down to me at all, ever, so I don’t understand why he left me with such loose skin. I guess I’m not as angry with him as I should be. I AM angry that I had to undergo multiple procedures to flatten out my chest so that I could wear a T shirt without having to put on an ace bandage underneath. That should not have to happen. I should not have to feel embarrassed or humiliated by my own body, ever. I should not be afraid to change my clothes around other people.

Editor’s note: It’s okay to feel gratitude to the surgeon for removing your cancer, and also anger at them for leaving you with a bad surgical result.  These feelings can and do co-exist for many if not most of us who have gone through this.

And for that matter, the Kettering Breast Evaluation Center in Dayton, Ohio has my anger. Just to veer off topic for one second, at my biopsy in April 2016 I wasn’t treated well either. One of the doctors in the room (they had brought observers) took his cell phone out when he came in and saw me. I don’t know what he was doing, and pulled the sheet to cover myself. HE PULLED IT OFF ME without saying a thing. It felt almost like assault. And speaking of assault, that biopsy was extremely painful and I don’t think they controlled my pain very well at all. I called the center later complaining about people just waltzing in without being introduced and hanging around cancer patients getting painful biopsies with their cell phones out. I don’t know what else to do about that regarding the way I was treated but yeah, they know I hate them I guess…

Today I have the confidence to walk around my yard topless. I often get quizzical looks from salesmen who come to my door – yep, it’s hot and I reserve the right to take my damn shirt off. I don’t exactly have the body I’ve always dreamed of, but it’s ok. I’m doing what I can to take care of what I have and enjoy the years I have left and trying to not let body issues get me down anymore.

“Deborah” – Flat Women Before Me Paved the Way

Editor: “Deborah” asked that her story be shared anonymously.  She was lucky to have a surgeon who respected her wishes to go flat, without her having to take extraordinary measures to protect herself.  This experience of respect by default – this is what ALL mastectomy patients deserve.

I am sharing my story because someone may need it.

I’ve always been told I had dense, fibrous breasts.  So when I felt a hard lump in my right breast in 2009 I wasn’t that alarmed.  I had gallbladder surgery pending and I was in between GP’s, so I waited until July when I saw my new GP to have it examined.  He felt it and sent me for a mammogram and ultrasound. Both were negative so he sent me for a biopsy consult. Thinking it was just a consult, I went on my own.

The physician there slapped my blackened images up on his screen and gestured towards them saying, “These tell me nothing”.  As I sat there naked from the waist up, he stood across the room looking at my breasts. He walked over and put his hand directly on the lump.  He said, “This is what we’re going to do” and led me to the biopsy area. As he was performing the biopsy, he showed me the screen as the needle sucked up cells.  He pointed to the area and said, “See? Those are abnormal. They’re not supposed to be there”. When he was finished with the biopsy, I sat up and asked, “This could be anything, right?”  He said, “I have to tell you, it was really hard and gritty when I put the needle in and that’s not a good sign”.  A little over a week later I received the phone call that it was cancer.

I knew immediately I wanted the whole breast gone, and it was then that I began to Google images of mastectomies.  I remember my wife and I looking at image after image as I said, “That’s not too bad”. And that’s why I’m sharing my story.  I was able to make an informed decision because other people were brave enough to show their mastectomies on the internet.  And I never considered reconstruction.  I was a 34A. I didn’t think that mattered.  All I could think about was getting that cancer out of me.

I had stage 3a invasive lobular carcinoma, a particularly sneaky form of breast cancer that often does not show on mammograms and ultrasounds.  It was, by breast cancer standards, a large mass and it had wormed its way into all four quadrants of my breast. It was in 2 of my lymph nodes but all breast cancer survivors worry.  Since I didn’t trust the tests, I asked for and received a prophylactic mastectomy on the other breast once chemo was completed.

I was lucky.  My surgeon was a good one and my chest is pretty flat.  I didn’t know then to ask for a completely flat chest.

My first mastectomy was 9 years ago this month.  The picture I’m including was taken just under a year ago.  To explain, I’m in my underwear because my sister had just had a breast reduction and texted me a picture of her in her underwear with her smaller boobs.  So I replied in the same manner and we both had a good laugh. But I share it so that I can pass on the knowledge and strength that women before me, those women with their flat chests on the internet, now both living and dead, did for me.


“In three words I can sum up everything I’ve learned about life: it goes on”. ~ Robert Frost

"Deborah"
“Deborah” was lucky to happen upon an ethical surgeon who was able to give her a reasonably flat result that she is satisfied with.

Call to Stakeholders to Speak Out Against Medical Assault

(Originally published on Facebook, July 23, 2018)

Women who are diagnosed with breast cancer, especially in the later stages, are asked to submit ourselves willingly to poisoning (chemo), burning (radiation), and amputation (breast surgery). It’s a sudden and difficult transition from seeing yourself as a healthy individual, to accept that you have a ticking bomb inside your body and that you might die of this disease even if you undergo all available treatments.

The one aspect of the treatment plan that the patient does have some measure of control over, is the reconstruction decision. Having your breasts amputated is no small thing. But there *is* no reconstruction option that can offer you new breasts. Reconstructed breast mounds, whether implant or autologous, are typically numb and non-functional. And they require multiple surgeries to install.

For some women, reconstruction feels right, and helps them heal psychologically from the devastation of breast cancer. For other women, the prospect of having numb, non-functional material on their chest is far from desirable, and healing from the devastation of breast cancer means getting back to their normal life as soon as possible. Both perspectives are valid. Both choices deserve to be respected.

This choice belongs to the individual woman – she knows her body, her mind, her heart, and her circumstances better than anyone else.

To have this choice stolen from you, is nothing short of devastating. I felt physically ill when I looked under my bandages after waking up from surgery. I knew instantly that the surgeon had left pockets for implants against my consent. My carefully considered choice to be one and done, was thrown away like trash on the side of the road.

To intentionally inflict this additional suffering (and additional surgeries) on a patient who has just been through breast cancer treatment – five and a half months of poisoning to the point of becoming bedridden for weeks on end, losing all of your hair, being unable to taste or properly digest your food, then having your breasts amputated, knowing that you will soon face six weeks of radiation while you heal from chemo and surgery – is unconscionable.

The difference between torture and lifesaving cancer treatment, is consent. We cannot allow this gross violation of woman’s bodily autonomy to continue unacknowledged and unchecked.

I call on Cleveland ClinicCleveland Clinic Avon HospitalCleveland Clinic Union HospitalCleveland Clinic – Brunswick Family Health Center) to take a stand against this injustice. I call on the Clinic’s executive administration, headed by CEO Tomislav Mihaljevic, to protect their patients now, as they failed to protect me.

I call on surgeons and hospitals across the nation and beyond, to lay down your pride and pretenses and acknowledge this problem. And take the necessary steps to protect your patients as your Hippocratic oath demands. History will hold you to account.

I call on national stakeholder organizations to address this problem as well. Its easy to ignore patients. Not so easy to ignore large, powerful stakeholders.

American Cancer Society
American Society of Plastic Surgeons (ASPS)
National Organization for Women (NOW)
Young Survival Coalition (YSC)
Susan G. Komen
Gloria Allred
ACLU

Informed Consent: The Difference Between Medical Care, and Battery

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Legally and ethically, surgeons must obtain informed consent from their patients before they operate. The AMA code of medical ethics is crystal clear:

“… informed consent occurs when communication between a patient and physician results in the patient’s authorization or agreement to undergo a specific medical intervention.” (1)

A surgical patient’s consent is specific to a defined intervention, and is not of a blanket nature wherein the surgeon is authorized to take liberties unilaterally while the patient is unconscious. A skin sparing mastectomy and a mastectomy with complete removal/flat closure, are two different procedures. If a patient consents to one procedure, and then while they are unconscious the surgeon decides to perform a different procedure, that action is unethical and a violation of the patient’s consent. It is also illegal, and constitutes battery:

“As a pure legal issue, forcing treatment on an unwilling person is no different from attacking that person with a knife. The legal term for a harmful or offensive touching without permission is battery. Battery is a criminal offense, and it can also be the basis of a civil lawsuit. The key element of battery is that the touching be unauthorized, not that it be intended to harm the person. Thus forcing beneficial care on an unwilling patient would be battery… If the patient has been lied to about the treatment or there is other fraud in the informed consent, then the entire consent is invalid.” (2)

The legal definition of battery does not require that the surgeon intend to harm the patient, only that the surgery was unauthorized – the fact that the patient did not consent to the procedure, alone is enough. In many cases of mastectomy patients wishing to go flat, the surgeons do act fraudulently in obtaining informed consent. My own surgeon literally told me, “I’ll make you flat,” after extensive discussion about the specifics and risks/benefits of the procedure.

In my specific case, in addition to battery, I was also subjected to assault, which is the threat of battery. When my plastic surgeon said, as I was lying on the operating table, “I’ll just leave a little extra in case you change your mind,” that was a threat of assault. A threat to violate my consent. And he knew that I was unable to defend myself because I was about to be anesthetized. Unconscionable.

Most women who have been subjected to this type of battery, were not assaulted in advance, but rather told afterwards that their battery was in their best interest. “I left you a little extra in case you change your mind,” “I left you some cleavage.” The surgeons routinely admit to battery, but they don’t call it that, of course. They frame their decision to batter the patient in paternalistic, confusing terms. This is a psychological manipulation technique known as gaslighting (not currently defined in US law).

“Gaslighting refers to a form of intimidation or psychological abuse where false information is presented to the victim. The purpose of such act is to make them doubt their own memory and perception. This term is also known as ambient abuse.” (3)

Patients hear their surgeon, to whom they entrusted their bodily integrity and their literal life, telling them something that is factually untrue, to their face, while they are in an extremely vulnerable state post-op and dependent on the offender for their surgical aftercare. In my case, because my surgeon had assaulted me as I was lying on the OR table, his gaslighting afterwards was along the lines of flatly denying the physical evidence on my chest, rather than re-casting it as a positive (the usual strategy). My surgeon told me that he had not left extra skin, and that it would “tighten up.” He lied.

Let me be perfectly clear. As a patient who was battered, my intention is not to sue the hospital and receive compensation personally. My intention is to bring this unethical, illegal practice to the public light, and put a stop to it for good. And I will do whatever it takes to make that happen.

Kim Bowles

Not Putting on a Shirt

(1) https://www.ama-assn.org/delivering-care/informed-consent

(2) https://biotech.law.lsu.edu/map/BatteryNoConsent.html

(3) https://definitions.uslegal.com/g/gaslighting/

$$$ Conflict of Interest for Flat Closure $$$

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When a patient facing mastectomy brings on a plastic surgeon solely to perform a flat closure after their SO (surgical oncologist) performs the mastectomy, this is called “co-surgery,” and reimbursement by insurance can be complicated. Often, it results in both surgeons receiving less than full payment for the procedure. Medicare, for example, splits 125% of the single procedure fee between the two co-surgeons, so each gets paid 65% of what they would have if they’d done the entire procedure themselves. Other insurance will pay 100% to the first surgeon performing the “primary procedure” (onc) and only 50% for the “secondary procedure” (plastics).

Since the plastic surgeon is already getting paid less for their time in the OR to make the patient flat, and they’re getting paid per procedure – NOT per hour – they seem to have every incentive to spend as little time as possible working on the patient, and potentially to do a hasty, incomplete job. And they know that they won’t be getting any further business from this patient who doesn’t want recon. Unless… unless they need another surgery to be truly flat.

Payment is not the only factor at play here. But it’s clear from the reimbursement perspective that plastic surgeons are highly disincentivized to provide a flat result in one surgery.

When my surgical oncologist recommended bringing a plastic surgeon onto the team to do a flat closure for me, I was completely unaware of these conflicts of interest. I have since anecdotally observed that women who used only one surgeon, the surgical oncologist, tend to have better and more completely flat results, than those of us who used a plastic surgeon. How sad is that? That we have worse outcomes with the specialist, than the generalist. Because of money? Is it that simple?

This is why we need buy-in from hospitals and surgeons. And we need solid data on this problem, bait and switch mastectomy surgery. How often does it happen? Under what circumstances? What are the risk factors or contributing factors? And how can we counteract them?

If we are committed to stopping this battery against patients, this is where we end up. We need to characterize the problem, before we can come up with a solution.

References:

Shouldn’t CANCER be your toughest fight when you’re fighting breast cancer?

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I’m sharing this image with permission from the woman pictured. You can follow her on Twitter @clreid56

Shouldn’t CANCER be your toughest fight when you’re fighting breast cancer?

Breast cancer takes away so much from a woman. And it takes it by force – you either do the treatments, or you die from the disease. That isn’t much of a choice.

Breast cancer steals your health. Your vitality. Your sexuality. Your hair, your eyebrows, and your breasts. Your physical, mental, emotional, and financial resources. It can and does ruin your personal relationships as well. Friends and sometimes even family members fall away as you morph into someone new, someone sick and weak, someone ruined and desperate. Contemplation of your mortality is more than many people can bear. But you must bear it, alone. You have no choice.

You can recover some of these things, but not all of them. The truth is, you will never be the same again.

The only real matter of choice 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. To snatch this away is the height of cruelty.

It’s dehumanizing. It’s unethical. It’s wrong.

No one knows why some surgeons cross this line. So far, the vast majority of surgeons and hospitals won’t even admit that it happens at all.

I’m here to tell you. IT HAPPENED TO ME. It continues to happen every day, as we speak. And it will keep happening again, and again, until we fight back.

Join me on September 8th to add your voice to the growing chorus that says, “NO MORE” to this cruelty.

It happened to me and I can’t change that… but I DO NOT have to accept it. I WILL fight back. I WILL do whatever it takes to put a stop to it. To protect women. To protect our daughters.

Join me.

Kim Bowles
Not Putting on a Shirt

The Hippocratic Oath

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The modern Hippocratic Oath serves as a moral code governing the actions of today’s physicians.

As a patient whose consent has been violated by the surgeon I entrusted with my body and my life… I would love to know what transpires in the minds of surgeons who cross the line and decide that they can and will commit this violation.

Because if I knew, I might be able to stop it.

Thanks to Lonnie Workman for inspiring this post. I’ve always known that my surgeon violated his Oath, but I didn’t realize just how powerful the words of the Oath would be.

I call on the Cleveland Clinic, and on Steven Bernard personally, to acknowledge the wrong that was done to me under their charge. And to work with me to ensure it doesn’t happen again.

Kim Bowles

What You Can Do to Protect Yourself

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UPDATE: You can download and print Not Putting on a Shirt‘s trifold brochure “Going Flat: How to Ensure You Get an Acceptable Surgical Resulthere (published 11/8/18).


I am often asked, by a woman facing mastectomy and wanting a flat result, what steps can she take to protect herself from being left mutilated as so many women have been?

As I have learned – and this is *reprehensible* – there IS no one hundred percent sure protocol that you can follow that will ensure that your surgeon respects your wishes. However, there are several things that you CAN do to increase your chances of success.

First and foremost is choosing a competent, ethical surgeon. Consult with multiple surgeons, both oncology surgeons and plastic surgeons. Ask to see pictures of flat results they have achieved for previous patients. If they have none, move on to another surgeon. If they push back and say you’ll change your mind, get out of there. Trust your intuition.

Once you have a surgeon that you believe is competent and willing to achieve a flat result, you can take the following measures to protect yourself against the bait and switch:

1. Make sure that it is recorded in your medical record that you want a smooth flat result (or however you describe your desired aesthetic). Ideally, you want this to be in your surgical consent form, which is the form you sign consenting to the surgical procedure. Sometimes there is a space for you to add notes on that form, and if you see such a space, definitely make your flat wishes explicitly clear there. My form did not have space and defined the procedure simply as “bilateral breast wound closure,” which leaves room for interpretation – not good.

2. Ask again to see pictures of flat results that your surgeon has produced for women previously. Ask your surgeon to explain to you in detail, how they arranged for those incision patterns to ensure a flat result. Ask how far back towards your back your own incision will need to extend, in order to remove the excess tissue under your arms (“wraparound tissue”). Make sure your surgeon feels comfortable doing what it takes, and taking the time required, to give you a great flat result.

3. Bring a competent, supportive witness (husband, partner, sibling, friend) while you discuss your wishes to be flat in consult. Make sure you’re on the same page going in to the consult. This witness needs to back you up and reiterate to the surgeon that they expect your wishes to be respected.

4. Repeat your wishes to be flat to every single person that you encounter in the surgeons office, as well as on your way to the operating room on surgery day. The nurses, the anesthesiologist, the surgical assistant. Everyone.

5. For your consult, bring photos of your expected result that you have sourced yourself. Google image search and the Facebook support groups for going flat (primarily Flat & Fabulous) are good sources. You can also bring photos of what you DON’T want (skin sparing mastectomies, botched results, etc.) to discuss the specific results you’re trying to AVOID.

6. Ask for specifics on how to surgeon is going to account for the effects of gravity. Will they mark you up before the surgery, sitting up? Will they sit you up in the OR in order to assess symmetry/sagging before discharging you?

7. Write on your forehead or somewhere prominent with a sharpie “I want to be flat” or whatever your preferred phrase is for your desired result.

8. Consider telling your surgeon the story of what happened to me, and countless other women, and see how they respond. If they’re shocked, that’s good. If they try to make excuses for those other surgeons, that’s bad.

9. After your consult, email your surgeon(s) recapping what you discussed in consult. Attach the pictures you brought. Ask them to confirm that this is the mutual understanding of the goal of this surgery, in writing, by responding to your email. If they refuse, that’s another red flag.

… And if you get any pushback, at any time, when you perform these protective measures, your surgeon is waving a red flag in your face, that they may not respect your wishes. Which puts you at risk for what happened to me, happening to you. You will lose your one chance to be one and done in one surgery. Do not let any protective measure you can take, stay undone. Do everything you possibly can to make sure that this does not happen to you.

Unfortunately, even if you take all of these steps, your surgeon can still unilaterally decided to leave you with excess tissue, against your consent. And as we have seen from countless cases, the surgeon will suffer absolutely no repercussions. The sad truth right now is this:

It’s a gamble.

And it will continue to be a gamble until we force the surgical community to hold their bad actors accountable. Until that day, we will continue to fight. I personally will continue to fight. Godspeed to all of you facing this surgery and it’s potentially traumatic aftermath. Make sure your surgeon knows that women are not going to accept these horrific disfigurements anymore. That you are not going to stand for this continuing to happen to women.

Godspeed.

The Future of Not Putting on a Shirt

PicsArt_09-18-12.05.39CREDIT: Amanda Newill

After I watched Kim Bowles whip of her shirt at the CEO’s office at Cleveland Clinic and demand to be heard, I knew I could support her in her cause.  Together, we founded Not Putting on a Shirt to advocate for satisfactory cosmetic outcomes—as agreed upon by mastectomy patient and surgeon(s)—for those who choose to “go flat.” – Amanda Newill, co-founder of Not Putting on a Shirt

Since her original sit-in, Kim has protested topless at Cleveland Clinic several times – sometimes alone and sometimes with the support of friends and family. She has been interviewed and featured in local TV news and national electronic print media. Not Putting on a Shirt is gathering a large following in social media. We have created an informational brochure, and our website is in the works.  We have hosted a growing database of “flat-friendly” surgeons for women facing mastectomy to have in their arsenal.  Additionally, we have created our “Going Flat After Mastectomy” survey, to provide us with some data to help us understand and address the problem of surgeons acting against patients’ wishes. Our t-shirt sales have helped generate funds to cover operating expenses.

What’s Next for Not Putting on a Shirt?

Continuing Our Ongoing Work

We will continue with the efforts we have already begun. Our “Going Flat After Mastectomy” Survey will be open through June of 2019, after which time, we will write a report on the data we have collected.

Kim will continue to protest in Cleveland when she can.  In October of this year (2018), we may be staging a protest at the Cleveland Clinic 2018 Medical Innovation Summit  (ironically, they call it “Disruption: Reimagining Healthcare,” and their stated goal is to “cut through the noise to ultimately deliver results to those who need it most: our patients.”).  Then in June 2019, we plan to start an annual nationwide awareness walk.  The walk on September 8th served as a good model for future walks despite the modest turnout.

Our social media interactions will provide community and support for women who have had mastectomies and women who will have mastectomies.

T-shirt sales will continue, at least until we have sold most of the shirts. In spring, we will probably sell women’s tank tops in time for the annual walk.

We will begin to work in earnest on our legislative agenda.  The goal is to have going flat as a legitimate reconstruction option (“flat reconstruction”), written into the WHCRA (Women’s Health and Cancer Rights Act of 1998), the federal law that requires insurance companies to cover breast reconstruction.  Right now, insurance companies are left to interpret the WHCRA and many interpret it to include breast mound reconstruction but exclude flat reconstruction. Credit: Melanie Testa

Providing Informational Support

Our website will include articles and links to research regarding a large number of topics related to reconstruction after mastectomy. Given plastic surgeons provide ample information about breast reconstruction, we will focus mainly on flat reconstruction, including considerations women make when choosing to go flat, surgeons with proven track records in providing acceptable flat results, going flat after explant, and more.

We are considering creating a booklet that can be sent to oncologists and directly to patients, near the time of diagnosis, that will discuss the option of not reconstructing breasts.

Additionally, we will review existing publications about mastectomy, breast cancer, and going flat, and share these reviews with our supporters.

Outreach and Networking

We’ll be seeking opportunities for Kim to speak women’s groups, starting locally. Additionally, we’ll start efforts to connect with surgeons who are “flat friendly,” as well as beginning a campaign in 2019 to attempt to inform surgeons about the flat option and encourage them to embrace this option.

Fundraising

The 2019 awareness walk and tank top sales will be our main fundraiser.  Our first capital campaign will begin shortly, where our goal will be to raise $10,000 to support Not Putting on a Shirt’s operating expenses. Funds will be used for:

  • Website design, hosting, and upkeep
  • Social media management, including publishing stories of those who have been through mastectomy/ies
  • Steps toward becoming a 501(c)(3)
  • Creating a supporter database and mailing list
  • Recruiting and organizing volunteers
  • Nominating and vetting potential board members
  • Possibly start looking for grant opportunities

By the end of the year, we hope to set a timeline for establishing a nonprofit corporation, obtaining a federal EIN, building a board of directors, etc. A strategic planning meeting will take place in January 2019; one focus at that time will be creating an operating budget and fundraising strategies.

Donations in support of our work may be made in the following ways:

  • PayPal to NotPuttingonaShirt@gmail.com
  • Send check or money order payable to Kimberly Bowles to Not Putting on a Shirt, PO Box 111215, Pittsburgh, PA 15238

“Flat Denial”:  Stand Up, Speak Out, and Protect Patients

I have struggled to come up with a label for the malpractice of leaving extra tissue on a mastectomy patient’s chest against her consent.  Labels matter – it’s hard to speak about an experience if you don’t have verbiage to describe it.  My friend Amanda has a dark sense of humor, and calls the awful surgical result that many patients are being left with, “a Bernard,” after the surgeon who did this to me personally in 2017, Steven Bernard at Cleveland Clinic.

“Please, doc, don’t leave me with a Bernard.  I don’t need any extra skin on there, take it all off.” – Amanda Newill

Leaving a patient with “a Bernard” against their consent is malpractice, it’s butchery by omission, it’s consent trampling/steamrolling… it’s all of these things, but it’s more specific than that.  If you have any ideas, please, contribute in the comments below. For now, I’m calling it “Flat Denial.”  It’s a denial of the patient’s carefully considered decision and a denial of their bodily autonomy.  It’s the denial of a reasonably flat result that was agreed upon by both parties before the victim was rendered unconscious and unable to protect herself, by a surgeon who either couldn’t do it right, or wouldn’t do it right.

Catherine Guthrie, in working on her article for Cosmopolitan Magazine online, used the term “flat refusal” which probably morphed in my mind, to flat denial. DENIED!

flat denial

I’d like to address the paternalism and consent trampling of flat denial, head-on, from a patient’s perspective.  Oh yes, I’m angry. I’m also, unfortunately, far from alone. Every day, more and more women are coming forward and telling their stories of flat denial.  We have been publishing some of these stories on the page here. If you have a story you’d like to share, including as much or as little detail and imagery as you like, please email me at NotPuttingonaShirt@gmail.com

Let’s be clear about the facts: operating on a surgical patient for whom you have not obtained informed consent, unless it is an emergency situation (which mastectomies are not), is malpractice.  When a mastectomy patient wakes up to a result that shocks and horrifies them; when they feel betrayed and/or tricked by their surgeon; when they feel that their wishes that they had clearly communicated to their surgeon beforehand were willfully disregarded while they were unconscious… did that patient’s surgeon ensure, as they are duty bound to, that the patient was informed about the expected outcome of the procedure?  If not, informed consent was not obtained.

If a medical professional truly has a concern about their patient’s competency to make medical decisions for themselves, it is incumbent upon that professional to be open and forthright about this concern and to take steps to protect the patient in a legitimate, prescribed manner.  This is done, for example, for patients who suffer from advanced dementia, and usually involves the courts.  Are mastectomy patients, typically women who are undergoing treatment for breast cancer, incompetent by virtue of our current circumstances? No. Do we forfeit our bodily autonomy when we become cancer patients? Absolutely not. Flat denial, the practice of lying by omission, and steamrolling over the patient’s consent, deceiving them to get them onto the operating table in order to do what you think is best for them regardless of their wishes – this is clear malpractice.

This is the 21st century, for those operating among us who haven’t gotten the memo, and women are no longer second-class citizens stripped of social, legal, and political power. We will not stand by while this type of abusive and, often, predatory behavior is perpetrated against women, and say nothing.  And do nothing. The era when women were hamstrung by our second-class status and unable to defend ourselves is a shameful chapter in human history, and it is coming to a close.  Those who participate in maintaining the status quo for their own benefit, will be viewed by future generations with shame and disgust. The women who have been victimized by flat denial, are not the ones who should feel that shame. Let’s put the shame squarely where it belongs:  upon the shoulders of the surgeons who perpetrate this, and upon anyone in a position of power who knowingly allows it to continue – in particular, those who participate in actively covering it up.

Flat denial is malpractice.  It is completely unethical, unacceptable, and should never be tolerated by the medical establishment. The fact is that right now, it is tolerated.  This tolerance is exemplified by the case of Dr. Steven Bernard, who steamrolled my personal consent in February of 2017. Bernard has been protected entirely by the powerful institution for which he works, the Cleveland Clinic.  The Clinic’s motto is, “Patients First,” and they are the #2 hospital in the nation. Of all the women who have come forward and shared their stories with me… NONE have received any acknowledgment by the surgeon or the hospital, of the wrong that was done to them.  Clearly, the medical establishment tolerates flat denial. This allows women to continue to be victimized, left mutilated and traumatized, to fend for ourselves in the aftermath following surgery.  And most of the time, while dealing with ongoing cancer treatment, which in and of itself is traumatic. Let that sink in.

Maybe the saddest part of the whole thing is that this intentional, permanent damaging of already vulnerable patients is completely and utterly avoidable.  As cancer patients, we trust our medical team to treat us in good faith – and in cases of flat denial, these are the people who violate us at our most vulnerable moment, when we are unconscious and unable to defend ourselves.

There is something rotten at the core of surgical culture when malpractice is widely condoned, covered up, and perpetuated.  The adage that keeps coming to my mind is, “physician, heal thyself.” In the Christian scripture, when Jesus said this, he was addressing hypocrisy.  Well, the hypocrisy of a physician who disregards the patient’s consent in order to do something to them against their will, causing serious emotional trauma and irreparable physical and emotional harm – specifically and intentionally forcing the patient to incur additional medical risk for revision surgeries – is shocking.

And it should shock people to hear about this.  How complacent would a person have to be to learn that this is happening to women, and NOT be shocked?  How unfeeling and frankly how utterly lost in terms of one’s moral compass, does a person have to be to hear about this malpractice, and think to themselves, the correct response here is to cover this up and protect the perpetrator?

It is simply unacceptable.  And I will continue to speak out until this malpractice ends.  I will fight until flat denial is no longer tolerated by the medical establishment; until surgeons are held accountable for violations of their Hippocratic oath to do no harm.  When flat denial happens to one woman, that’s a tragedy. When it happens to hundreds of women, maybe even thousands? THAT is a systemic sickness within the medical establishment that must be addressed aggressively from the inside out.  If I have to stand outside with my shirt off to make that happen, so be it.

To the women who have been victimized, I’m here to tell you:

You are not alone.  I stand with you.

And I will continue to fight for you, for our daughters, until flat denial is acknowledged and addressed by those in power: surgeons, hospitals and hospital administrators, and legislators.

I call again on ALL public stakeholder organizations to speak out and stand up for mastectomy patients because clearly, individual hospitals are refusing to do so.  In July of this year, I sent out an email identifying flat denial as a systemic problem, and requesting the acknowledgment/support of the following organizations.  I only heard back from one of them, the Young Survival Coalition (watch for the publication of a blog post on this issue in the coming weeks).  The other organizations have not responded to my email at all.  I sent another email out today and will be calling each one of these organizations tomorrow. These are the stakeholders I have identified (I’m sure there are others – please add your ideas in the comments):

American Cancer Society (allison.miller@cancer.org)

National Organization for Women (press@now.org)

American Society of Plastic Surgeons (media@plasticsurgery.org)

Susan G. Komen Foundation (press@komen.org)

Coalition for Patient’s Rights (apierce@gidellc.com)

Until the medical establishment acknowledges the existence of flat denial, we face an uphill battle getting this problem solved.  I will leave you with the words of Breastcancer.org, a non-profit organization:

“Some women who want no reconstruction say their doctors just assumed they wanted reconstruction or that they’ve felt pressured by their doctors or family members to have reconstruction… If you feel that your doctor isn’t fully listening to you or isn’t taking your choice of no reconstruction seriously, make an appointment with another surgeon to get a second opinion.” – Breastcancer.org

It should go without saying that the onus here shouldn’t be on women – cancer patients no less – to change our behavior to protect ourselves against predatory medical professionals.  That is entirely backward.  The onus should be on the surgeons and hospitals to PROTECT THEIR PATIENTS.

Is that really too much to ask?