International Media Coverage Begins

International media coverage is starting to trickle in…42840783_2307149962645704_6838345322649878528_n in the same way that we at Not Putting on a Shirt hope that the still small voice of their conscience is now starting to trickle into the minds and hearts of the surgeons who are responsible for inflicting flat denial upon unwitting women.

From Spain: “We want to have control over our own bodies.”

From Italy, two articles including translations of portions of women’s health journalist Catherine Guthrie‘s groundbreaking Cosmopolitan article, How Sexism in Medicine is Hurting Breast Cancer Survivors.

Follow breaking news coverage as it happens on our Twitter and Instagram feeds.

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Brut Media Publishes Not Putting on a Shirt Video

New media coverage alert!

Digital platform Brut America, which publishes short news/issue videos on social media to engage viewers, has picked up on NPoaS’ patient rights activism and just published a great Facebook video about it.

The only thing I’d mention is that the percentage of patients who choose to go flat is highly age-dependent. From what I’ve seen, over age 60, the 25% figure mentioned in this video actually grows to a significant majority (close to 80%).

Thanks to the folks at Brut for helping us get the word out!

Harvard Medical School Social Work Program Manager Emeritus Speaks Out on Patient Consent (Article)

Oncology social workers are the change makers in the breast cancer patient’s world, which has suddenly contracted after diagnosis and transformed her life into something unrecognizable, confusing, and frightening. These multi-talented professionals help patients to navigate the new world and advocate for themselves. They often know about their patient’s experiences in an intimate and comprehensive way that other professionals involved in patient care do not.

One of these amazing women, Hester Hill Schnipper, the program manager emeritus of oncology social work at Beth Israel Deaconess Medical Center at Harvard Medical School, has just written an excellent article on patient consent in the mastectomy setting.

“Mastectomy Patients Deserve Honesty and Full Disclosure about Reconstruction Options“

“Recently I have been in several very disturbing conversations with women who have recently had breast surgeries at other hospitals. In each case, a woman underwent a mastectomy, or bilateral mastectomies, but awakened to find that the specifics were not what she had anticipated.

Through the years, I have known only two women who regretted what they had done and both were able to alter their first choice. One, who had opted for no reconstruction, went back two years later to have that surgery. The second, who had chosen reconstruction, opted later to have the implants removed and go flat.”

Hester Hill Schnipper, LICSW, OSW-C, Mastectomy Patients Deserve Honesty and Full Disclosure about Reconstruction Options (editor’s bold)

I really took heart when I read Hester’s article because so far, we haven’t heard from many medical professionals who are willing to address flat denial publicly. The medical community at large is finally taking notice!  This is clearly due in large part to recent media and social media coverage of the issue, and at its core, is the product of so many individual women pouring their hearts and souls into this work.  And that includes each and every individual woman who has shared her story with Not Putting on a Shirt (archived here on the blog under the “Survivor Stories” category).

This is how we move forward to a better culture of consent for mastectomy patients – with the help from our friends in the medical community who are brave enough to speak out in support of their patients.

Please, share your thoughts with us. Comment below, on our Facebook page, or email us at NotPuttingonaShirt@gmail.com

We are Making an Impact! NPoaS Featured in Professional Educational Presentation for Oncoplastic Surgery

Women’s health journalist Catherine Guthrie‘s Cosmopolitan article last month dragged the despicable practice of flat denial out of the shadows and into the light of day.  Guthrie recently posted on her blog that she was contacted by one of the surgeons she had interviewed during the course of her (extensive) research, and what she heard from this surgeon blew me away.

This is an excerpt from Guthrie’s post.  Dr. Patricia Clark, a breast surgeon who travels the country teaching other surgeons how to perform an effective flat closure, sent Guthrie the following email:

“I thought you’d like to know…I was speaking at an international advanced oncoplastic surgery course over the weekend and your article was put up on the screen by the surgeon doing the opening introductory speech emphasizing respect for patient choice. It was presented and referenced several times during the conference with the photo of the patient [Kim] holding the sign demanding surgeon accountability…” Dr. Patricia Clark, speaking to Catherine Guthrie, Sept 18, 2018

This means that we are beginning to make an impact in the medical community!  Those of you who have shared your flat denial stories publicly, those of you who posted in solidarity with Not Putting on a Shirt during the Virtual Walk on September 8th, those of you who have shared my own story, and those of you who helped NPoaS fundraise to support the cause… those of you who came out to Cleveland, and Pittsburgh, and marched through the rain on the sidewalks… we are being heard.  This is proof.

As Dory says… “keep on swimming!”

 

Lisa – “Nothing could have prepared me for what I looked like after surgery”

Editor: Lisa had OVER A DECADE to decide what surgical option she would choose if her original breast cancer returned.  Still, her surgeon unilaterally decided to leave her with a skin-sparing mastectomy to facilitate future reconstruction. Lisa says in her story that she should have consulted a plastic surgeon… but, as we know from my own story (Kim) and others, bringing a plastic surgeon onto the team does NOT guarantee a decent flat result.  The onus should be on the surgeons to ensure the patient knows what they are “consenting” to… when a patient feels that her decision was ignored, did she consent to that procedure? NO. For anyone reading that thinks they should have done x, y, z… I am here to tell you. This is NOT YOUR FAULT.  The fault lies with the paternalistic surgeons. Lisa deserved better and so does every woman facing mastectomy.  Our bodies, our choice.

My story, as it relates to breast cancer, began in 2004. I was in my third year of law school and having no insurance, went to the campus health center for my annual exam. I complained about a lump I’d found in my left breast that was really sore and bothering me. After the exam, I was told it was nothing to worry about, that I was too young for breast cancer, and to have a mammogram when I turned 40. I was 33 at the time and the following year I complained again to my new doctor. Fortunately, she took it seriously and sent me for a mammogram and ultrasound. I then had to see a surgeon for a biopsy and he recommended removing the lump since it was painful even though he thought it was very unlikely to be cancerous. Surprise! The surgeon came to see me before I was discharged and told my wife and I it was indeed breast cancer. Next came an additional lumpectomy under a new surgeon because the first one didn’t get clean margins (and was a huge jerk!), followed by chemotherapy and radiation. Then I got about the business of moving on with my life, which was littered with a seemingly endless list of ongoing side effects.

Fast forward to 2017. Over the years I vocalized many times that if the cancer ever returned, I would get a double mastectomy without reconstruction. I had the opportunity to research the available options during that time when I had a couple of scares that turned out to be benign. I knew I didn’t want foreign things in my body and I definitely didn’t want to cut muscles just to have boobs! [Ed. For the uninitiated, autologous flap reconstruction uses the patient’s own tissue to reconstruct a breast mound, and some of these procedures involve transplanting muscle as well as fat and skin.]  I started wearing a bra in the 4th grade and had large breasts my whole life. I had back pain and at this point, I also had a significant size discrepancy between my breasts due to radiation from the first time around.

So, December 8, 2017, I went in for a core needle biopsy. It hurt like hell and my surgeon was so kind about everything. He had performed a lumpectomy on me in 2007 (one of the scares) and did such a good job that I had to actually search to see the scar. I remember telling him that afternoon that if it was cancerous, I already knew that I wanted a bilateral mastectomy without reconstruction. He promised to call me that day with at least preliminary results and he kept his word. My phone rang a little after 8:00 pm that evening and it was my surgeon calling to tell me that, unfortunately, my cancer was back.

Honestly, I took it pretty calmly, I think because I already knew. I told him again that I wanted a bilateral mastectomy without reconstruction. He said the bilateral part wouldn’t be a problem because I had another lump on the right side as well, we just hadn’t biopsied it yet (it was cancerous too). As for the reconstruction, he wanted me to let it all sink in and think about it. I said I’d already thought about it for a long time and really didn’t want additional surgeries, but since it was Friday night…ok, sure I’d think about it and would be calling Monday to get on his surgery schedule.

During my pre-op appointment, I saw him again and we kind of went through the whole conversation again. Should I have consulted a plastic surgeon before surgery – yes, absolutely [Ed. The onus should be on the surgeon as the medical professional, to refer the patient to a plastic surgeon when the circumstances necessitate that – this is literally in the Hippocratic Oath] – but when my surgeon said he thought it should be done within the month because it appeared aggressive and it was on both sides, I went with his professional opinion. And when my surgeon said even if I make you as flat as I can, you can always change your mind later and have reconstruction with implants, I did not understand that he meant I was going to look like the Bride of Frankenstein!

Nothing could have prepared me for what I looked like after surgery and I have gone through a lot of mental anguish over my appearance. Am I thankful to be alive? Of course I am. But I also think I should have the right to make up my own mind about how I’m going to look and what I want my body to feel like.

THIS IS NOT OKAY…

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“Nothing could have prepared me for what I looked like after surgery… THIS IS NOT OKAY” – Lisa

PSA: Now available – list of “flat-friendly” surgeons

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Great news for women who are facing mastectomy and wish to go flat! We at Not Putting on a Shirt have been entrusted with a carefully compiled list of “flat-friendly” surgeons across the US and beyond, who were recommended by women who have gone through mastectomy and have been satisfied with their flat results.
Email us at NotPuttingonaShirt@gmail.com with the location(s) where you are considering having your surgery, and we will do our best to respond within two business days. As of June 2019, we have over 120 surgeons on the list across the US and Canada (we even have a few surgeons from Europe, the Middle East region, and more), and it’s growing steadily. It’s not a comprehensive list, but it’s a good start.
As we grow our organization, providing patients with relevant information on specific surgeons and institutions will be an area of focus. If we know better, we can do better. This list is a great place to start.  With the caveat that there are no guarantees in medicine or in life, I will say personally, that I wish *I* had access to this list prior to my surgery. I might have avoided losing my chance to be one and done. But, it’s not too late for future patients!  When utilizing information from the list, please make note of the following obligatory disclaimer (this is also included with all list correspondence):
“1. Any and all information provided by Not Putting on a Shirt and its representatives is for informational purposes only and should not to be considered as medical or legal advice. This information is not intended to diagnose, prescribe, treat, or cure any medical condition. Statements should not be taken as a substitute for medical advice from a licensed physician. In using the communications, documents, forms and other information from Not Putting on a Shirt, you accept the terms and conditions of this disclaimer.
2. If you wish to go flat, please be warned that not all surgeons will respect your wishes. That is why Not Putting on a Shirt exists as an advocacy organization, but we are a work in progress. This document is a list of breast surgeons and plastic surgeons who have been recommended by women who went flat via mastectomy, explant, and/or revision surgery by these surgeons. Please be aware of the following:
2.a. The participants in creating this list have no relationship whatsoever with any of these surgeons beyond a medical one, and no money, fees or compensation of any kind is paid by or collected from these surgeons in regard to this list. This list of surgeons is comprised purely from recommendations by women in a Facebook group for flat women, and the women of the group are the ones that decide to add or subtract a surgeon based on their good or bad experiences with them.
2.b. Not Putting on a Shirt and it’s representatives have not vetted these surgeons, and take no legal or ethical responsibility or liability for your experiences with any of these surgeons. PLEASE DO YOUR OWN CAREFUL RESEARCH AND DUE DILIGENCE ON THESE SURGEONS. A surgeon’s appearance on this list is NO GUARANTEE of the surgeon’s behavior, skill, and/or performance.
3. Please also note that everyone’s body is different, and you should not expect a “perfect” flat result following mastectomy, explant, or revision surgery, even if your surgeon does the best s/he/they can. These surgeons are recommended because women felt they
3.a. Respected them and their wishes to be flat,
3.b. Were technically competent in surgical technique to achieve a flat result, AND 3.c. Did the best they could do give them the results they desired.
4. We welcome any feedback you may have about these surgeons including adding a surgeon or removing a surgeon from the list. Please email Not Putting on a Shirt at NotPuttingonaShirt@gmail.com to correspond.” – NPoaS Legal Disclaimer, Flat Friendly Surgeons List
If you have information you would like us to include in the list, please email us at NotPuttingonaShirt@gmail.com.

ATTN: Greater Cleveland Area Women!

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I am sending out a call to all greater Cleveland area women who have chosen not to reconstruct after mastectomy and were dissatisfied with their surgical result.  The esteemed Sara Goldenberg of local news station WOIO Channel 19, is looking for women to tell their stories in a follow-up piece to her original coverage of this issue earlier this year.  Sara has proven to be professional of the highest caliber, and her reports have been honest, fair to all parties, and executed in good taste with sensitivity to the extremely personal nature of the issue at hand.

Please, consider sharing your story!  This will help spread awareness of medical assault and battery against mastectomy patients.  It’s easy to ignore one woman speaking out… not so easy when we all stand together and take courage from each other’s stories.

Please comment below or email me at NotPuttingonaShirt@gmail.com if you are interested in speaking to Sara.  Thank you all!

Save the Date! Tuesday, October 23, 2018 – Cleveland, OH

Oct232018SavethedateSave the date for our next public event!

Tuesday, October 23, 2018 – Cleveland, OH

If you missed the Walk on September 8th… here’s your second chance!  Walk with me in solidarity, to hold surgeons accountable for respecting the wishes of their patients who choose to go flat after mastectomy.  Walk details to follow later this week.

Why October 23rd?  Well, Cleveland Clinic, the #2 hospital in the nation, who has actively and repeatedly covered up the malpractice perpetrated against me in 2017 by their surgeon Dr. Steven Bernard, will be holding their 2018 “Medical Innovation Summit” from October 22-24.  The Clinic says that this conference will “… cut[s] through the noise to ultimately deliver results to those who need it most: our patients.”

I call shenanigans on this.  Delivering results to patients?  In my experience, Cleveland Clinic delivered me up a heaping platter of medical battery with a side of assault, followed up with an expertly constructed dish of gaslighting the crap out of me, with a distinct finish of stonewalling and deceit.  And I am far from the only woman who has experienced this battery.  Dozens of women have shared their similar stories with Not Putting on a Shirt, and with Catherine Guthrie, published in Cosmopolitan Magazine, in recent months.  That’s just the tip of the iceberg.

Medical assault and battery against mastectomy patients who forgo reconstruction is a systemic problem in the culture of the surgical establishment.  I guarantee they won’t be talking about that inside of their conference hall.

… And that’s where we come in, folks.

We are here to say, “NO,” to demand that hospitals PROTECT THEIR PATIENTS.

I may not be able to offer my supporters the “keynote meals and nightly cocktail hours… it is kind of a big deal” that Cleveland Clinic lavishes their donors with. But I can offer you this: the opportunity to stand up for what’s right.  To stand up for those who can’t stand with us themselves, because these are CANCER PATIENTS we are talking about.  To hold surgeons accountable for violating their Hippocratic Oath in a most egregious manner, victimizing some of the most vulnerable among us.  And to hold hospitals accountable for knowingly allowing this malpractice to continue.

I will be out there in Cleveland on October 23rd with my shirt off, protesting this injustice for everyone at that conference to see.  They won’t talk about it… but I will.  I will shout it from the rooftops.

Because until surgeons and the institutions who protect them acknowledge the reality that mastectomy patients are facing under THEIR WATCH – women being left mutilated and forced into additional surgeries to repair the damage, because their surgeon didn’t respect their wishes, and was either unable or unwilling to prove them with a reasonably flat surgical result – until this reality is acknowledged, it will continue, unchanged.  And women will pay the price, with our bodies and our lives.

As for Cleveland Clinic, they love to crow about their motto, “Patients First.” Their Chief Experience Officer, Adrienne Boissy, after finally relenting and speaking with me in person several months ago (well over a year after my complaint) to discuss my demands, had her assistant send me the following email:

“… We are sorry this has been difficult for you and wish the outcome was different…

Unfortunately, we recognize that despite our many calls, emails, in-person meetings and repeated investigations, we cannot meet all your expectations at this time.“

– (Stephanie Bayer, email from CCF CXO Office, July 30, 2018)

My demands (or, “expectations,” as they so dismissively call them) were, simply, that the Clinic acknowledge the malpractice and that their response was inappropriate; that they discipline Bernard as they see fit; and that they put in place a system to ensure this doesn’t happen to other patients.  And the best that they could come up with in response is “we wish the outcome was different.”  What an embarrassingly inadequate and disappointing response from the #2 hospital in the nation.

If Cleveland Clinic can’t get a handle on this problem, what hope do we have for the other institutions?

That’s why I’m not going away.  And I’m not putting on a shirt.

Until my (simple, reasonable) demands are met and Cleveland Clinic acts in good faith to protect their patients, I’ll leave you with my words in response to Stephanie up there:

“I’ll see you on the sidewalk.”

– Kim Bowles, email to CCF CXO Office, July 30, 2018

Join me on October 23rd!

Stay tuned for event details.

 

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.