Supporters

“I was diagnosed with HER2+/PR+/ER+ breast cancer when I was 36. I recently celebrated 5-years cancer-free and have shifted my focus from my own treatment story to the collective journey of breast cancer survivors. Until this fall, I thought the challenges I faced during my surgical period were isolated to only me. Through listening to the stories of other survivors, though, I have learned this challenge is common enough to have a name: Flat Denial.

“From the day I was told I had cancer, I knew I did not want reconstruction after mastectomy. My surgical oncologist asked me to see a plastic surgeon twice before my scheduled mastectomy. Both times I explained to both the plastic surgeon and my surgical oncologist that I had no interest in reconstruction. After my mastectomy I was quite swollen so I didn’t know anything was wrong. Over several weeks, though, the area never went flat. I scheduled a follow-up appointment with my surgical oncologist to ask if it was infected or there was a problem with scar tissue. She told me during that appointment that she had left behind tissue intentionally, so it would look more natural in the event I changed my mind and wanted to get reconstruction.

“I was so angry that my clear instructions that I had repeated from March 5 on my day of diagnosis through August 10, my day of surgery, had been ignored. When I had an oophorectomy 4.5 months later, a different surgeon corrected my mastectomy and took out that extra tissue. For that first 4.5 months post-mastectomy, though, I could not comfortably go out in public without tightly binding my chest under bandages or by wearing a bra with prosthetics because the lumpiness was so pronounced. This caused needless embarrassment and shame about my appearance for those 4.5 months.

“I really loved my surgical oncologist a lot–she was a phenomenally supportive surgeon in all other aspects of my care and I still hold affection for her. But what she did in that case was wrong. I thought it was an isolated incident. Through other survivors, however, I learned that Flat Denial is incredibly common, particularly for younger women.

“Once I learned this, I shared my story with the surgical team, including the URL to Not Putting on a Shirt. Not only did several of them respond supportively to the email, but they even ordered brochures from the organization to share with colleagues and patients. While I know this is not the end of the story and there might be other women who face a similar fate in my hospital, the chances of that are significantly reduced because of the e-conversation that took place among the surgical staff and the resource-sharing made possible through Not Putting on a Shirt.”

“I was 59 when I faced breast cancer for the second time. The first time (12 years previously) resulted in a lumpectomy followed by radiation. My only option was a mastectomy. I originally planned to have both breasts removed with immediate reconstruction. I met with the plastic surgeon and scheduled the surgery. I left his office with the brochures from the implant company in my hand.

“I finally read the brochure a few days later… there in writing was their best estimate that there would be a 27% chance of complications, additional surgeries, etc. Following that sentence was the sentence that made me stop in my tracks. The chances of complications doubled if there had been prior radiation. I knew then that I wanted nothing to do with reconstruction and all the potential visits to doctor’s offices, potential complications and potential surgeries. I wanted to LIVE my life… not spend it trying to keep a fake blob on my chest so I would look better in clothes.

“I was fortunate. My breast surgeon did a beautiful job on my breast removal. I have almost invisible scars and no “extra” skin. After a few years I was horrified to see the mangled chests of so many women. It was apparent to me that their doctor’s either didn’t have the proper skills, or just didn’t care that they left them with an unsightly mess.

“We are faced with a difficult decision in these situations. We deserve honesty, compassion and surgical outcomes that don’t leave us embarrassed. We deserve to be treated with respect without doctors making us feel ‘less than’ without breasts.”

“Since none of my healthcare team members talked to me about the option of going flat, I discovered this option by myself — on the infamous Internet. Maybe it was never on their radar because I was a good candidate for a lumpectomy…

“No matter why I was not made aware of this choice, it is not okay that I had to educate myself on it, through various websites and Facebook groups. It is not okay that this choice is not presented to women from the very start.

“And it is certainly not okay that so many women are being left with anything less than clean and aesthetic flat closures after they specifically asked for a flat chest…

“Not Putting On a Shirt is part of those essential organizations whose voices we hear louder and louder. Because a lot of women are not heard and need to be.”

“Diagnosed at age forty, I was blissfully unaware of the business of breast cancer.  It took me five years of healing, researching, and reflection to really grasp what happened.  I went to an esteemed research hospital in Philadelphia for my treatment.  I am still here almost six years later.  We can call it a success.  But there were undeniable bumps in the road, placed there by my medical team.  It could have been a much smoother ride.

“My surgeon did not provide me with the option to go flat.  In fact, he very specifically told me if I chose the bilateral mastectomy he would ONLY perform it if I agreed to reconstruct.  He told me I was too young not to reconstruct; whatever that means.  I was not informed of the complications associated with implants by my plastic surgeon.  Therefore, I did not readily recognize the symptoms that subsequently developed as related.  My chest was tight, as if a band was placed around it.  I felt as though I had to work to inhale.  My breasts were freezing.  I had sharp pain on one side.  I could not sleep. 

“It was my own researching and conversations with a friend with similar issues that eventually brought me to an explant specialist.   I had my implants removed about a year ago; the symptoms removed as well. 

“I still wonder why it was so important for my breast surgeon to have me reconstruct.  No one asked me about my body image or assessed me psychologically, oddly since it’s such a personal, intimate decision. Going flat is the most uncomplicated way to let your body heal from a mastectomy.  My surgeon did not allow me that choice.  For whatever reason, he believed he could edit my medical options.  That is just not okay.  Providing all patients with all of their post mastectomy possibilities is a doctor’s job.  Thinking and choosing for those patients, is not.  If for no other reason, please provide the option of going flat simply because it IS a valid medical course of action.  And if you can put yourself in your patient’s place, do it because it’s the right thing to do.”

“The reason that this organization and its efforts are so important is that many women never have the opportunity to hear about this option following Mastectomy. The advocacy efforts of this group forced recognition of “flat closure” as a valid option for women and encouraged professionals in the field to actively present this as an option and to become proficient in procedures to provide women undergoing cancer surgery with an option that was aesthetically pleasing versus women being left disfigured and forced to endure more surgeries or live medically mutilated.

“Many Surgeons didn’t even present “flat” as an option – mine sure didn’t – and actively tried to coerce patients into reconstruction (mine DID). As a patient who verbalize a wish to be flat for months before surgery, and who trusted her surgeon to do as discussed only to find pockets, extra skin and “dog ears” following a cancer driven double mastectomy, I can definitively say this organization and the education and advocacy they provide is a necessary and beneficial thing for patients. Unfortunately, fixing the “leftover extras” the Surgeon unilaterally decided to leave behind is not as simple as waiting for a bad haircut to grow out and trying again for the look you wanted.

“This work – promoting choice, recognition of ‘flat’ as a valid choice, and encouraging skillful and talented surgeons to add this to their repertoire of procedures done competently – can add some much needed control and peace of mind to the ordeal of a cancer diagnosis and treatment.“

“A  breast cancer diagnosis comes with countless questions and endless worry.  At every turn, you question your choice of doctors, treatments, surgical options, medications, diet choices, lifestyle factors, etc. If that weren’t enough, you also have to combat the antiquated ideals upheld by most of the medical community regarding what is considered “normal” following breast cancer surgery. This is why the education, advocacy, and outreach being carried out by Not Putting on a Shirt is not only critical for patient awareness, it is equally if not more important from the standpoint of physician understanding and awareness.  

“Regrettably, I, like so many other women first faced with the reality of impending mastectomy, failed to receive transparency and support regarding options, risks, and outcomes. More often than not, after initial talk of cancer staging, grade, and genetics is covered, the conversation typically steers right towards implants. There is no mention of going flat. Not only is it expected that you will have reconstruction, but you are also actively dissuaded from considering otherwise and warned of the dangers of not doing so. Women are told that they are too young, will regret their choice, and experience depression or risk marital complications when they voice their preference for remaining flat. And while the surgeons won’t divulge the dangers associated with breast reconstruction, breast implant illness, rejection, infection, or pain, they are quick to tell patients opting for flat that they should leave excess skin at the time of mastectomy since there is a good likelihood that they will change their minds and want to reconstruct once they experience the disappointment of their appearance.

“This is unacceptable, it’s demeaning, it’s unethical and it has a name.  It’s called gaslighting.  Women have the right to refrain from pursuing breast reconstruction and still expect an aesthetically pleasing outcome.  There is no reason why a woman should be left with a mangled mess of twisted tissue atop their chest.  It is possible to remove both breasts and leave behind a smooth, clean contoured chest free of excess skin and tissue. Furthermore, doctors need to understand that these decisions don’t come easy for patients and painful periods of mourning and consideration went into making these decisions. Denying patients their wishes is not only unhelpful, it is criminal.  

“Like so many other women, I had my reasons for wanting to evade the long list of potential complications associated with breast reconstruction.  Specifically, I had to take into consideration my long-standing history with chronic autoimmune conditions and all that this implied for healing, post-surgical inflammation, and the potential for rejection of foreign bodies within my chest wall.  Others of us have young children that we want to get back to raising and hugging without the need for repeated surgeries, pain, and downtime. Some of us have demanding jobs that can’t be compromised by lengthy and painful interventions like breast expanders.  Some feel they are too old to risk unnecessary surgeries and procedures while others just want to get back to the business of living and welcome the opportunity to experience a one-and-done surgery and heal as quickly and painlessly as possible.  There are countless valid and sensible reasons for wanting to pursue flat closure.   These reasons should be considered, supported, and even encouraged by surgeons.  I found myself having to defend this choice but fortunately, thanks to Kim Bowles and the tireless efforts of NPOAS, I had the information, the language, and the confidence to assertively advocate for myself and my desired outcome and I experienced a positive outcome as a direct result.  On behalf of myself and all past, present and future women that benefit from your valiant efforts to bring information and awareness about this healthy and valid option for breast cancer surgery, thank you.  You have helped us to find our voice and take back ownership over our bodies. “