The Roots of Flat Denial – guest blog by Kim Bowles
I was 35 years old, with a nursing baby and toddler at home, when I was diagnosed with stage 3 breast cancer. I went through what I call the “kitchen sink” treatment – chemo, double mastectomy, radiation, and more chemo. I had decided against breast reconstruction and brought on a plastic surgeon to give me a nice, clean, flat chest (at the time, the term “aesthetic flat closure” didn’t exist). But instead of doing his job, he left excess skin “in case you change your mind” about implants. Those were his last words as I was lying on the operating table slipping away under anesthesia, after he had agreed to make me flat.
I woke up devastated and traumatized, having been unable to protect myself from him and knowing I would need further surgery to fix what he had done to me. This experience prompted me to start my advocacy career, founding Not Putting on a Shirt, a mastectomy patients’ rights organization advocating for optimal aesthetic flat closure. Our goal is to end what we have coined “flat denial” and to ensure patients’ consent is respected, every time.
To delve in further, some definitions are in order:
Negligent Flat Denial
When an egregious amount of excess skin is left against the patient’s consent due to lack of skill or regard on the part of the surgeon
Intentional Flat Denial
When an egregious amount of excess skin is left against the patient’s consent “in case they change their mind” about breast reconstruction
Flat denial, in particular intentional flat denial, is no doubt a violation of the patient’s bodily autonomy. Part of the reason it’s so shocking when people first hear about flat denial is exactly that egregiousness… How could a doctor, a person who has sworn an oath to help people, do that to a patient on purpose? The answer is that they think they’re helping the patient. These doctors truly believe, and frequently say to their victims as justification for their actions, that the patient will change their mind about reconstruction and that in the end, having the extra skin will be to their benefit. This is straightforward paternalism, combined with the sexist idea that women need breast mounds in order to be “whole”… but that’s not the whole story, either.
We have to get into the weeds a bit to understand the rest of the story. Until 2009, research showed no psychosocial benefit to breast reconstruction. But then came the problematic BREAST-Q, which is used to conduct research on post-mastectomy patients. This tool, whose development was funded by the Plastic Surgery Foundation and breast implant manufacturers, has survey questions that include, “with your breast area in mind… how often have you felt normal… [or] like other women?” and “how satisfied are you with how your bras fit?” For flat women, who are aware we don’t look “normal” and don’t mind, and usually don’t wear bras at all, these questions don’t accurately capture how we experience our survivorship. Unsurprisingly, studies using the BREAST-Q sometimes (not always) do show a psychosocial benefit to reconstruction. This has contributed to a general sense amongst some in the medical community that reconstruction is somehow beneficial to all patients, if only they would accept it. This certainly contributes to flat denial.
Under what other circumstances do doctors do things to patients against their consent “for their own good”? This is an instructive question to ask when trying to put the issue into context within our culture. Most of the time, consent is sacred and inviolate. There are textbooks dedicated to medical ethics and consent that cover exactly how to ensure respect for informed consent. The only other example I can think of that happens today is obstetric violence – when a patient is in labor and the doctor performs a procedure on her against her consent, such as an episiotomy or a manual placenta removal. And historically, some female patients were forcibly sterilized “for their own good” while they were under anesthesia for other procedures. In all these scenarios, the patient is a woman in a compromised position – unable to defend herself.
Paternalism, sexism, biased research… The last piece of the puzzle for intentional flat denial is the clear lack of accountability in the medical system. Patients have little to no recourse when their surgeon leaves extra skin “in case they change their mind.” Hospital systems close ranks around their own and refuse to own up to the reality of what transpired as to do otherwise would be to admit to allowing malpractice on their watch. Medical boards’ review processes are far from transparent and haven’t resulted in any disciplinary action to date, to our knowledge. And medical malpractice attorneys refuse to take these cases because the damage caps are too low to make it worth their while. This leaves victims in the lurch. Until institutions start taking flat denial seriously, victims will only continue to be re-traumatized and let down when they seek justice. It’s long past time for change.
At Not Putting on a Shirt, we have been working hard to address these different aspects of the problem. Combatting paternalism and sexism requires a culture shift, from seeing going flat as a “less than” choice to seeing it as having equal standing with breast reconstruction. Part of our focus is on promoting flat visibility and showing the world – including medical providers – that women are happy flat and don’t need breasts to be “whole”. We have partnered with Stand Tall AFC, an annual visibility campaign that encourages flat women to participate openly in breast cancer awareness month events (like walks), including going topless in order to showcase their flat closures.
The other part of the culture shift involves research on patient outcomes. We have to establish unbiased research to counter the problematic BREAST-Q results that are biasing doctors towards reconstruction, and we are working on exactly that. Our pilot studies encouraged the development and publication of a groundbreaking UCLA study which established that flat denial occurs around 20% of the time, and we are currently working on developing both an aesthetic scoring tool and an alternative to the BREAST-Q.
Aesthetic Flat Closure
We have also had success on the legislative front. In New York state in 2022, we worked with legislators to pass Chapter 571, a law which requires insurance to cover aesthetic flat closure (AFC) services and also requires the state to include AFC in their patient educational literature.
This law solves the problem of patients having to fight with their insurance companies to get revision surgery (i.e., to fix the chest wall after flat denial) paid for in New York State. It will serve as a template for other states and even for the federal law, the Women’s Health and Cancer Rights Act of 1998. That’s on the horizon.
In the meantime, we provide information, tools and resources on our website to empower patients to protect their choice. We provide comprehensive information on going flat at mastectomy, revision and explant. We have a large photo gallery of good and bad flat results that patients can use to show their surgeons what they do and do not want. We publish and ship free of charge illustrated brochures with questions to ask your surgeon that patients can use in consultation to vet their surgeons for skill and regard. And we curate a Flat Friendly Surgeons Directory over 500 providers strong, of patient-recommended surgeons with proven track records performing successful flat closures. In short, we provide everything that I wish I had access to when I was facing surgery – everything which I believe will help patients avoid being subjected to flat denial as I was. It’s the least I can do to support those women facing mastectomy who just want a decent flat closure and to move on with their lives. After all, that’s what every patient wants, and what almost all doctors want for their patients: to be able to move forward with body confidence and get back to living life.