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Our Message to Victims
What just happened to me?
Did you decide against breast reconstruction, and agree on a flat closure in consult with your surgeon prior to the operation? Did you wake up to a result that is nowhere near “flat”?
It may be a moderate amount of excess tissue that was left, or it may rise to the level of what’s called a “skin-sparing” procedure which essentially leaves “deflated breasts” to facilitate implant reconstruction. And/or it may be that the closure was done carelessly and inexpertly, resulting in puckering, folds/creases, significant “dog ears,” and other uncomfortable and unsightly not-flat outcomes.
In either case, if you suspect that you are a victim of flat denial, we are here to tell you: this is NOT your fault, and you’re not alone. This happens to women all the time, unfortunately. And until we can put a stop to it, women are going to have to deal with the aftermath. We have written these guidelines based on our experience with flat denial. We hope you find them helpful. If you have questions, please contact us.
Dealing with the Trauma of Flat Denial
Flat denial is a traumatic experience. In some cases, it rises to the level of medical assault and battery. Feelings of betrayal, violation, sadness, rage, regret, panic and despair are all normal after an assault. If you find these feelings to be lingering, severe and/or debilitating, please seek help from a qualified mental health professional.
The first resource for locating such a professional is the social worker or nurse navigator at your hospital. Even if you aren’t experiencing extreme distress, speaking with a therapist or social worker who specializes in cancer related issues can be very helpful in processing what has happened to you, as well as in deciding how to move forward. Many localities have non-profit cancer community centers that offer support groups and sometimes even individual counselling at low or no cost to cancer patients.
You can also find personal support from women like you in the private Facebook group for victims:
“Can This Be Fixed?”
Please know that an unacceptable mastectomy result can almost always be improved, often dramatically, with what’s known as revision surgery.
These surgeries are sometimes done by a plastic surgeon, sometimes by a general or breast surgeon. The goal is to remove all remaining excess tissue and “clean up” the surgical site to create a smooth, flat, final result. Oftentimes these surgeries don’t require drains, and the healing period is typically much quicker than with the original mastectomy.
What was done to you in most cases need not be permanent.
Many women who choose to go flat, do so in order to be “one and done,” with the overriding goal of avoiding additional surgeries. It can be disheartening, even downright depressing, to be forced into the position of facing additional surgery that could have been avoided. Accepting that you have lost your chance to be done in one surgery, is a grief process, and will involve all the emotions that entails. You may decide that revision surgery is not worth the risk – many women do.
You have time to think about what’s best for you.
Whatever you ultimately decided… this is not something you have to decide RIGHT NOW. Revision surgery can be performed months or years in the future. Especially if you are facing radiation, most surgeons advise waiting at least a year to have your revision surgery.
Insurance companies sometimes balk and initially refuse to cover revision surgery. If your new surgeon’s office knows how to code for the procedure correctly, this should not be a problem.
First: Get Your Medical Records and Take Pictures
If you suspect you may have been victimized, please don’t hesitate to request a copy of your medical record, including consultation notes and post-operative reports. This way, in the event your surgeon decides to cover his or her tracks by altering the record, you already have the originals. You can usually request your records by calling the surgeon’s office, or by calling your insurance company.
The rule of thumb when you have been victimized is to document everything. Taking pictures of your chest at regular intervals (once every month, for example) is also an important step in ensuring that your experience is documented. Many surgeons will deny leaving excess tissue, and/or claim “it’ll tighten up” (it almost certainly won’t – with the exception of explant surgery, skin stretches over time – it doesn’t contract). It helps to have your healing process visually documented.
It will likely be very difficult for you to look at your post-op chest. This is not what you chose to look like after your mastectomy, and for most women who experience flat denial, that is extremely upsetting. Please try to remember that even when a woman’s wishes are respected, the sudden drastic change in the appearance of your own body can be shocking and traumatic. Surgical drains and incisions are uncomfortable and not easy to look at either.
These feelings are normal, and you won’t always feel this upset looking at yourself. But it will take time.
Take Care of Yourself First
Now is the time to take care of YOU. After you have made sure you have proper documentation, your next task is to take care of your own physical and emotional needs. When faced with a decision, whether it’s dealing with your medical trauma specifically or just in life in general, ask yourself, does this protect my interests and well-being? You have just experienced a serious additional trauma on top of breast cancer treatment, which in itself is traumatic.
Be gentle with yourself and put your own needs first.
Be gentle with yourself and put your own needs first. Your first priority right now is healing from the mastectomy. This is an amputation. It’s not a cosmetic surgery. You will need at least 2-4 weeks if not longer to even begin to resume normal daily activities, and you will need rest, hydration, and proper nutrition in order to heal properly.
If you are recently post-op and still need surgical aftercare (drains, follow-up exams, wound care management), you will probably feel inclined to find a new surgeon. Many women do not want to continue to see the same surgeon that victimized them and feel that continuing to see that surgeon re-traumatizes them. We recommend finding your new surgeon at a new facility to avoid retaliation and ensure that your aftercare isn’t compromised. Unfortunately, it can sometimes take weeks to get in to see a new surgeon. If you are able, cast a wide net by calling multiple surgeons and seeing who can get you in the soonest.
You may wish to wait until after your surgical pathology report comes back to fire your original surgeon, if you wish to speak with that surgeon about the results. This usually takes 1-2 weeks. This report will help determine your surgical, medical, and radiation oncologists’ treatment plan for you moving forward. If it was your surgical oncologist who victimized you, you will definitely need to find a new surgical oncologist first.
Sticking to your cancer treatment plan and getting appropriate cancer care should always be your #1 concern – and you can only do that under the care of a surgical oncologist. You may be facing chemotherapy, radiation, ongoing surgical drain aftercare, complications from the mastectomy, or other pressing medical concerns.
Never delay radiation or other cancer treatments in the hopes of getting a scar revision first – it’s not worth the risk.
Questions to Ask Your New Surgeon(s):
When you speak with the new surgeon(s), you will want to explain what happened to you. Try to stick to the facts. You agreed on a flat closure, your original surgeon clearly didn’t honor that agreement, and now you are looking for another surgeon to provide surgical oncology care (or plastics care) for you moving forward. It’s in your interest to stay calm and collected, even though that may be difficult.
It may help to write down what you plan to say so that you don’t have to “perform” at the consultation. It may also help to bring a trusted friend or partner, not only as a witness, but as emotional support for you… and, frankly, the presence of a second person can help ensure that the surgeon takes you seriously.
To download these questions as part of our Protect Your Choice brochure, click below:
Evaluate their response to your story.
The way the surgeon responds when you tell your story, is your first clue as to whether they are going to be trustworthy. A surgeon who tries to make excuses, seems to blame you for what happened, or generally treats you unkindly or with disregard, is not someone you will want to trust with your body.
Their response should be one of care and concern. They should be able to to explain to you in detail how they will proceed to ensure you an acceptable flat result:
- Will they bring on the team, or refer you to a plastic surgeon? If not, proceed with asking very specific questions about their plan. If so, ask the same questions of the plastic surgeon.
- Are they familiar with oncoplasty and/or flat closure techniques?
- Have they performed flat scar revisions for previous patients? Ask to see pictures of their work.
- How specifically will they ensure that YOU get a flat result, given whatever specific challenges you face – severe dog ears, scarring and tissue damage from radiation after your original surgery, co-existing health conditions like lymphedema or diabetes, “excess” body fat (more tissue can require additional time in the OR), special concerns you may have about scar placement, and so on.
- Will they sit you up to mark the site prior to surgery, to account for gravity’s effect on the tissues? If not, how do they “check” their final result”?
- Will they be going in through the original scar? If not, what incision pattern will work best for your body, to achieve a flat result? There are various patterns including T, Y, fishtail, continuous between both mastectomy sites, and more.
- How do they close the incision, with staples, stitches, glue?
- You may also want to ask if it’s likely you will need surgical drains, just so you know what to expect.
- Does their office know how to properly code for scar revision so that insurance covers it?
The final challenge is coding for the revision surgery so that insurance will cover it. This can be a thorny area. It’s ultimately the surgeon’s office’s responsibility to solve this problem, but many surgeons – even plastic surgeons – are not experienced in this area.
If the surgeon tells you your revision won’t be covered… it may be time to find a new surgeon!
Dressing Your Body After Flat Denial
You may have been looking forward to showing off your new flat chest, or you may be a more private person. Some women are surprised at how their new flatness changes their body image for the better.
But when you’ve been a victim of flat denial, you can feel stuck somewhere you never wanted to be. No breasts… but not flat, either.
Feelings of disgust, humiliation, sadness, anger and despair are all normal responses to the type of violation of your body’s integrity that flat denial imposes. It might be hard for you to even look in the mirror at first. That’s ok. It won’t always be this difficult. If you find these feelings to be extreme or debilitating, please seek help from a qualified mental health professional. Part of healing is taking care of your emotional well-being.
It won’t always be this difficult.
You will get through this!
Many women left with excess tissue, choose to wear compression garments to contain the tissue and create a more flat contour. Other women find compression uncomfortable and prefer to wear baggy clothing and/or layers to camouflage the lumps and bumps. And some women choose to wear prostheses in the interim.
Every woman is different. You should wear what makes you feel the most comfortable overall.
And this might change over time. You might feel better with compression at first, and then find some styles of tops that allow you to ditch the compression. Clothes shopping after mastectomy can be emotionally exhausting, even more so when you’ve been a victim of flat denial and are stuck “in limbo” as some women have described it. Be gentle and patient with yourself. You will get through this!
For more on dressing your body post-mastectomy:
Confronting Your Surgeon
Making the call to confront your surgeon
NOTE: If you have retained an attorney to pursue legal action regarding your surgical experience, please follow their instructions carefully in all related matters. Confrontation may not be advisable in your specific legal situation.
The choice to confront the surgeon who inflicted flat denial upon you, is a highly personal one. Don’t feel obligated to do so for any reason – put your own physical and
emotional health first. Flat denial is a traumatic experience and while there are aspects of healing from the trauma that all victims share, no two victims have exactly the same values and priorities. Your first duty is to yourself – to heal from this trauma as best you can.
As with any major decision, it can help to think about the pros and the cons of confronting your surgeon. Let’s be conservative and start with the cons.
Reasons Not to Confront Your Surgeon
You should know that most victims of flat denial do not confront their surgeons. There are many reasons for this:
- Some patients fear that confrontation may compromise their medical care via retaliation from the surgeon, hospital, or medical community at large. Even if you have retained another surgeon for your surgical care, addressing flat denial socially and legally is largely uncharted territory and your decisions must be carefully evaluated in light of your specific circumstances.
- Many victims don’t understand what happened to them and may have internalized blame and shame. After flat denial its routine for the surgeon to gaslight their victims, and until recently there was no one discussing the problem publicly to counteract this.
- Until recently there was no clear language available to victims to articulate their experience. How do you confront your abuser if you can’t name the abuse as such? Some surgeons will say they “did you a favor,” or were “able to leave you some cleavage,” as though you should be grateful for their violation of your consent. That is emotional abuse, piled on top of the initial physical abuse of your body.
- Confrontation is a highly stressful and therefore unpleasant prospect for many victims. Victims can reasonably anticipate negative reactions from their surgeons when faced with an accusation of flat denial. Since confrontation is not required in order to proceed with revision surgery at another surgical practice, the stress may not be worth the emotional cost – and many victims choose to move forward without confrontation.
Reasons to Confront Your Surgeon
Bear in mind that while confrontation has potential emotional risks, it may also have emotional benefits. How you come away from the confrontational interaction will depend on many factors – your level of comfort with conflict, your social support system, your personal physical and emotional reserves, and the surgeon’s response to the confrontation – to name a few. What are some reasons patients choose to confront their surgeon?
- To achieve a sense of closure
- To fulfill a sense of moral obligation to ensure the surgeon is fully aware of the consequences of their actions
- Because they don’t want to pursue legal action but do desire some kind of acknowledgment of their experience
Consider Whether Your Flat Denial Was Negligent or Intentional
Whether your surgeon inflicted flat denial upon you intentionally or through negligence is also an important consideration when making the decision to confront:
Negligence. A surgeon who lacked technical skill and didn’t fully inform you of this fact prior to surgery is probably more likely to respond positively to confrontation, than a surgeon whose actions were intentional. Since flat denial has been a taboo subject until very recently, you may very well be the first of your surgeon’s patients to bring your dissatisfaction to their attention. They may be appreciative of your efforts to enlighten them, and the confrontation may materially change the way they treat mastectomy patients in the future. That’s the best possible outcome.
Intentional Disregard. A surgeon who had the technical skill to create a smooth flat contour but chose instead to “leave a little extra in case you change your mind” intentionally and against your clear directive, will likely be less receptive to your message than a surgeon who was negligent. These surgeons have crossed an ethical line further into the red zone than negligent surgeons and have likely rationalized their actions. Confronting such an individual with the reality of their severe moral and professional failure may provoke a strong negative reaction.
Consider the Possible Outcomes
When faced with an anxiety-provoking decision, it can help to try to imagine what possible outcomes might look like, both positive and negative, to take away some of the fear of the unknown.
Negative Outcomes. What are some of the worst things that could happen? That depends on who is asking the question but some possible scenarios include (these are taken directly from patient experience):
- the surgeon not responding at all and leaving the room to avoid facing you
- your being asked to leave the hospital either by the surgeon or by hospital staff
- the surgeon denying what happened or using other techniques to invalidate your experience
- the surgeon blaming you – your actions or your physical attributes (age, weight, size of breasts) – for your cosmetic outcome
- the surgeon using abusive language
Positive Outcomes. What are some of the best things that could happen (these are also taken directly from patient experience)?
- your feeling a sense of closure or relief
- the surgeon genuinely apologizing
- the surgeon’s regret leading to improvement in their treatment of future mastectomy patients (by seeking additional training in flat closure, bringing on a plastic surgeon for their patients going flat, or appropriately referring these patients to a competent colleague)
Proceeding With Confrontation
If you feel that part of your personal healing process may involve confronting the surgeon – directly addressing the surgeon, naming the trauma they inflicted, and sharing your sentiments – there are two ways to go about this. You can confront them in person, you can confront them in writing.
Confrontation in person will mean scheduling an appointment with the surgeon. Prepare for your visit by:
- writing out what you plan to say;
- practicing how you will address various responses the surgeon may have to your message;
- bringing a trusted support person with you who can provide emotional and/or informational support during the confrontation – they should commit to maintaining a calm demeanor during the visit;
- if you are considering recording your discussion, keep in mind that the legality of this option varies by region and exercise due diligence
Confrontation in writing allows you to avoid real-time interaction with the surgeon, both positive and negative. You can request that it be included in your medical record. No support person is required.
Things to Keep in Mind for Your Confrontation
It’s up to you to define your personal experience of flat denial – what happened, what it meant to you, how it affected you. The following general principles may also be helpful.
- Informed consent was not obtained. Your surgeon is a medical professional and as such they are responsible for obtaining informed consent before operating. The fact is that they failed to inform you of the expected outcome of your surgery – therefore, they failed to obtain informed consent. The onus is on the surgeon, not the patient, to ensure that informed consent is obtained.
- This decision belonged to you. The surgeon may indeed have experienced past patients changing their mind about reconstruction after initially choosing to go flat… but that does not excuse disregarding a patient’s clear directive. No person can predict the future with 100% certainty, and that’s not a reasonable expectation to have of any person, including patients facing mastectomy.
- Flat denial harms patients medically. Revision surgery on an area that has local lymphatic system disruption can reasonably be considered a risk for lymphedema. Operating on irradiated tissue can lead to wound healing complications. There are risks associated with general anesthesia, which may be required for revision surgery. And every additional surgery increases the cumulative risk of infection and other complications.
- Flat denial harms patients financially. Additional surgery can be costly for the patient financially as well. Deductibles, time off of work, travel expenses, etc.
- Flat denial harms patients emotionally. Victims can experience everything from minor distress to PTSD. Flat denial is a serious trauma.
- The harms of flat denial are avoidable.
- Moral degradation. Some of the same attributes that lead a person to join the surgical profession – high intelligence and self confidence, ability to (hopefully reversibly) objectify their patients in order to successfully operate – may leave them vulnerable to moral degradation over time. Most surgeons consider themselves to be highly ethical, and most start out that way.
- Oncoplastic training is available. Training is available for breast and general surgeons in oncoplastic breast surgery techniques – flat closure after mastectomy falls under this category – through the American Society of Breast Surgeons and elsewhere.
The choice to confront your surgeon is a highly personal one. Flat denial is a traumatic experience and your first duty is to yourself. Put your well-being first. Fighting back can take other forms if you feel you want to fight back but aren’t ready for or don’t want to pursue confrontation.
Document Your Experience
Protect yourself. Collect all your documentation in one place (a folder, binder, etc.) You have your medical record. You have your pictures of your post-op chest. Now you can make your timeline – this is a running list of actions you have taken and communications you have sent or received, regarding your flat denial experience.
You don’t have to do anything with this documentation – but if you decide to pursue legal action, you’ll be glad you have it.
When finding the following entities (law firms, medical board, etc.) in your search for justice, keep a record of each entity you contact, what was discussed, and their response. Keep a record of any and all communications you have with the hospital, the old surgeon, or any other entities involved. Print everything out with dates.
If you think you might want to pursue legal action against the surgeon who violated your consent, the time to speak with an attorney is ASAP. Many states have shockingly short statutes of limitations for medical malpractice – sometimes as short as one year. At one year post-op, many breast cancer patients are still in active treatment, and don’t have the capacity to pursue legal action. If you are able, call several medical malpractice and/or personal injury firms in your area (specifically, in the geographic area where this happened you).
When you speak with attorneys, stick to the facts. Write down your story and then try to pare it down to an executive summary, or “elevator pitch,” that you can tell over the phone. Stress that you have documentation of everything. It can be something like this:
You were subjected to what you believe to be medical battery. You consented to a flat closure, and your surgeon did something completely different against your will. In addition to emotional distress, this necessitates additional surgery to fix, which is always risky.
Contact Other Entities
Next, you can start contacting other entities to inform them of the malpractice that was perpetrated against you. Please note that this list may not be comprehensive. The list is in the order in which it would be prudent to initiate contact. If you are able, retain an attorney first.
You will want to file a complaint with the hospitals Ombudsman office as soon as you are able. We recommend retaining an attorney first and taking their advice, but if you are unable to find an attorney to represent you (as many women have been to date), you should still file a complaint with the Ombudsman. This will show that you are acting in good faith by giving the hospital a chance to address the problem.
In our experience, unfortunately, hospitals will attempt to cover up what happened. They don’t want to admit malpractice because it opens them up to a lawsuit. Remember to ask for copies of ALL correspondence.
Hospital Ethics Board
This letter is simply a notification of the Ombudsman proceedings and to ensure that the ethicists hear your story. The ethics board typically will not involve itself to help you. But you may have an impact on the individuals and hopefully that will at least lead to discussions within the hospital about what you experienced. Print out any email correspondence from the ethics board and keep it in your folder.
Access the form letter at the link below (“Flat Denial Form Letter – Hospital Medical Ethics Board”)
Hospital Executive Administration
This letter will be sent straight to the top (CEO), and copy the other relevant entities below (Surgery Department Head, Patient Experience Office). You may or may not receive a response to this letter.
State Medical Board
Every state has a medical board which licenses doctors and other medical professionals. They field complaints of misconduct and pursue disciplinary action as they see fit. Unfortunately, this is not a transparent process. After your initial discussion (usually over the phone, or in person) with the investigator, you likely won’t hear back from them until they make a decision on your case. The important thing here is to document that you have taken the proper steps to get the malpractice addressed, notified the proper entities, and can proceed with your legal case.
Your Insurance Company
You may want to notify your insurance company that your surgeon’s unethical actions (operating without informed consent) have necessitated additional surgery. On this basis, the insurance company may elect to reduce or rescind their reimbursement for the procedure. Insurance companies interests are aligned with patients who want to go flat – they save money when we only require a single surgery.
State Department of Insurance Fraud
You may also want to notify your state’s insurance fraud task force of the situation. Of course, there’s no way for you as the patient to know for sure if fraud occurred, but it stands to reason that a surgeon acting against the patient’s will to ensure a repeat surgery, and therefore a repeat reimbursement by the insurance company, may have had a fraudulent motive. When you file this notification, the task force can investigate. As with the state medical board, this is not a transparent process, so once you initiate the complaint you may not hear back for months.
A message for victims from Not Putting on a Shirt‘s Founder, Kim Bowles
I am truly sorry this has happened to you. I hope these guidelines have been of some use – or at least of some small comfort – during this difficult time. My goal is to put an end to flat denial so that these guidelines will one day be obsolete.
Part of putting an end to flat denial is ensuring that surgeons and hospitals know that we, the patients, WILL hold them accountable for treating women who choose to go flat with the same honesty, care, respect and dignity afforded to our breast mound reconstructing sisters. We will NOT tolerate flat denial.
Documenting our experiences, I believe, will play a key role in the process of characterizing how and why flat denial happens, and in facilitating formulation of protocols and resources that will make a difference for patients.
Tell us what you think.
FAIR USE STATEMENT
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