International media coverage is starting to trickle in… 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, twoarticles 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.
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!
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.
“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
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.
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…
“Nothing could have prepared me for what I looked like after surgery… THIS IS NOT OKAY” – Lisa
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.