Maribeth: “Instantly I awakened to the reality of all that had happened”

Editor:  Maribeth’s well-articulated experience below is an example of flat denial by intentional disregard – when a surgeon performs a skin-sparing mastectomy instead of the agreed-upon flat closure, in order to facilitate future recon “in case you change your mind.”  Some surgeons lack the skill to make the patient flat, but that wasn’t the case here.  Maribeth’s surgeon, in the year of #MeToo, simply decided she knew better than the patient – and there was nothing to stop her from following through with her plan.

I ask medical professionals reading… where is your voice?

Who will protect these patients?

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Maribeth’s result: this is what flat denial by intentional disregard looks like.

I had just come off a year of focusing on my health in a big way -eating clean and losing 60 lbs. in an effort to “take charge” of my body once and for all as I was approaching my mid-50s.  I’ve always been “doctor avoidant,” feeling intimidated and skeptical of traditional medicine and the power structure inherent in that system, only attending to the bottom line, basic health needs such as my annual mammogram. I felt lucky having escaped any serious health issues.

When I was called back for a repeat mammogram in February 2018, I was not alarmed.  I’d been called back on my very first mammogram some 14 years prior which turned out to be of no concern, and the tech this time had warned me that due to my significant weight loss in the past year, I should not be alarmed if I was called back as my breasts might look different in the imaging this time.  Thus, I had no anxiety as I returned, other than a mounting suspicion that something more serious was going on based on observing the faces and actions of the techs, although of course (due to traditional medical protocol) no concerns were shared with me, that is another story…

Fast forward through a stereostatic biopsy (done twice in one sitting) and further imaging, to March 2018 when I was diagnosed with DCIS (ER+ grade 3) in my right breast. As the diagnostic process unfolded I was already feeling kind of duped. I had begun to sense that something wasn’t right, but was the last to know, I was relieved however to at least be assigned a female breast surgeon (Assistant Professor of Surgery, Harvard Medical School, specializing in breast disease, surgery, and surgical oncology). I was aware of the frequent reality that surgeons may not have the best “bedside manner,” but felt comfortable that my surgeon was a woman. I was terrified, she was an expert, and I knew I had to find a way to trust that she would take care of my body, however wary I was of entering the system.

Once lumpectomy with radiation was off the table due to multiple areas of DCIS in my breast, single mastectomy with sentinel node biopsy was the focus. My breast surgeon launched into a discussion on my reconstruction options and set me up with a plastic surgery consult.  There was no mention of going flat. (Until I did my own research, I was not even aware that “flat” was an option)! My surgeon spoke of reconstruction as if part of the cancer treatment itself; reconstruction was simply what was done when one undergoes a mastectomy.

Looking back, the reconstruction consult was an overwhelming and confusing blur as various procedures were discussed in such a matter of fact way. My breasts and belly were handled and maneuvered to determine whether I was a candidate for the “cutting edge” DEIP Flap procedure.  “Looks like there’s enough belly fat for one breast, and given there is ptosis (sagging) in both breasts, we could adjust the other to get a symmetrical look…”  I left in a traumatic state, not wanting any kind of implants in my body, but terrified to endure a longer, more invasive surgery (was not told that reconstruction actually involves multiple surgeries).

On the way home I was reviewing the consult with my partner, repeating what was said about the DIEP Flap. I remember hearing, “you get to have a tummy tuck and new breasts all in one!”  Even though my feminist self had never been an advocate for plastic surgery, I thought “well, at least there’s that I guess…” (Going through the gauntlet of breast cancer treatment and reconstruction options certainly makes one vulnerable to abandoning your own values, especially if you think it will save your life).  My partner looked at me as if an alien had landed in the passenger seat, saying, “Do you realize they will be slicing you open from hip to hip as part of that surgery?” (Later I read that they might even dissect a rib)!

I went home and did my research.

I poured over the online forums outlining reconstruction details and ultimately came across categories such as “living without reconstruction” and “going flat.”  I discussed my options at length with trusted others and ultimately decided to have a double mastectomy.  I knew right off that once this was all over I did not want to endure regular mammograms laden with anxiety and extra precautions that could involve future biopsies, and I wanted a symmetrical appearance as well, so a BMX seemed the only option for me.  Moreover, within the context of my own tribe, I returned to my true self; who I am in this world and what is important to me, and decided the right choice, for me was to decline reconstruction and go flat. I even started to embrace the idea on some level.

In my 2nd appointment with the breast surgeon, I shared my decision – “a one and done” surgery and asked if I chose to stay flat with no reconstruction would she be able to give me a smooth result.  She seemed to be rather surprised. I wished she had given me the time to convey just how deeply I had considered my choice. I had wanted her to know more about why this was the right decision for me personally, but the meeting seemed rushed.  She did respond affirmatively, however, saying I would simply look like “my 10-year-old self…a 10-year-old girl, without nipples.”  She said it could be done, she would do it, however then went on to identify a “one and done” implant option for me to consider and set me up for a second reconstruction consult!

This time on the way home I was furious, feeling that after doing my research and going through a soul-wrenching process, I had made a decision, but had not been heard! (A harbinger of things to come).  Later that afternoon I left a message with the nurse navigator (sadly someone who was also rather unavailable) letting her know that after much deep thought and consideration I indeed wanted to go flat, to please cancel the reconstruction consult, and schedule my surgery.  I was ready and wanted to get the whole thing over with!

I had a bi-lateral mastectomy on May 25, 2018.

The day of surgery, my breast surgeon had a much warmer demeanor and bedside manner about her both before and after the procedure. All I remember was feeling great relief that I made it through the surgery and in my post-surgical haze my surgeon saying, “I left a little extra in case you change your mind down the road…insurance will cover it…”  In that moment I did not know what that meant, I actually said “thank you,” feeling grateful that my body had been in such “expert” hands.  I even sent her a note indicating the same a few days out. I had not looked at my result yet, nor registered the words she spoke to me post-surgery.

I had my drains and dressings removed after a week. The surgeon popped in to have a look.  I felt honored that she personally took me, arm around my shoulder, into the staff bathroom “to look in the mirror together.”  As she expounded on how great the healing looked, pointing to and saying she was able to make short incisions and leave me a little cleavage, I was already dissociated from a painful drain removal and not having anticipated  I would be seeing myself for the first time in this way. I could barely look, only enough to notice much bruising and what seemed to be a lot of swelling. What did I know? She was the expert and was happy, I assumed my “10-year-old chest without nipples” would emerge down the road.  I know differently now.

The next day, my sisters who had been with me prior to surgery were visiting, and joking with me about my drug-induced state before the procedure. I have no memory of the content, but they shared how I was giving the residents a hard time, asking them what they planned to do to me (my sisters know of my cynicism when it comes to the medical profession). Finishing the story, my one sister said, “…so after that exchange the resident pretty much just said, ‘ok you are scheduled to have a skin-sparing mastectomy, see you on the other side…”

“Wait, WHAT???,” a rush of fury and anxiety came over me hearing my sister repeat what the resident said. Suddenly my heart began to pound and my battered chest began to ache as everything came together. Instantly I awakened to the reality of all that had happened; how my surgeon had pushed me toward reconstruction, the words she spoke to me post-surgery, what I saw when the bandages came off, and what I was seeing on a daily basis as my body was healing, but not smoothing out as anticipated. 

Although my sisters and my partner where there the morning of my surgery, and knew I was going flat, they did not understand the term “skin sparing,” so would not have known to say anything at the time, and I was completely out of it, not even remembering speaking with those residents. I still feel haunted by regret that I did not make sure they knew all the terminology prior to that day.

I emailed my surgeon, still feeling compelled to be polite, professional and deferential, sharing my concern about not appearing flat as we spoke like “a 10-year-old girl”, and thought It would be good to be seen to go over it all together. I received what I felt to be a curt and condescending response, talking about my need to give time for healing, I was only a few weeks out from surgery, and in a few months, if I stretch my arms above my head or out to the sides, I will appear flat. She declined my need to meet.  Given her very important and very busy schedule, I decided to set up an appointment with her nurse practitioner, where I more clearly voiced my concerns, and shared that I knew of and had seen other women whose flat results did not look like mine – lumps on my sides, wrinkling fleshy skin, a dimple of some sort –“perhaps it’s swelling,” I said, holding out hope.  Still fearing to reveal what I learned the residents say, I did wonder out loud with her if my surgeon performed a skin-sparing mastectomy, even though I had been clear that I wanted to be flat.  She looked in the notes and said she didn’t see anything stating that, and then minimized my concerns upon examination. She spoke about what she saw and felt and that I did not have any swelling. She said what she was seeing and feeling was ‘just me” (what did that mean?), and the dimple I was referring to was something that probably “just got caught” and could be “cleaned up” later on if I wanted.  I DID NOT WANT THERE TO BE A LATER ON (I screamed in my head)!  She went on to say I was only 3 weeks out, I needed to be patient with my healing, that “all bodies heal differently. More egregiously, she went on to say “…and just because ‘Tiffany and Sally’ look one way, you can’t expect you will look the same….”  I felt my face get hot, wanting to voice my frustration saying (but didn’t), “Firstly, who the hell are Tiffany and Sally (?), and Secondly, I am a 55-year-old woman who just had her boobs amputated! I’ve been traveling this planet much longer than you have. I’m a therapist by profession with a masters degree, and at this point in my life I understand quite well that “all bodies are different!”

Something else happened (or didn’t happen) to my body during my surgery that day, and no one was owning up to it!

After that meeting I fell into a period of despair; feeling gaslighted and powerless, along with a gnawing guilt around feeling anything but grateful given that my pathology report came back clean – no more treatment required.

I stumbled upon Kim’s facebook posts soon after, and learned that I was not alone in my experience of not being heard. Kim framing the experience I had as “Flat Denial” has profoundly resonated with me, helping me to recognize that it was not “just me.” Learning about and from Kim’s reality and so many others has helped me to talk back to the voices in my head that shame and blame me for not speaking up enough; that it’s my own fault that I am not satisfied with my results.  Watching her Not Putting On A Shirt movement develop and evolve continues to inspire and empower me.

I am not yet certain of what I will do next or whether I will consider a surgical repair of the damage done.  I’m still grappling with having wanted a “one and done” surgery, that there is no “medical need” to undergo another surgery given I have NED (no evidence of disease), yet being forced into a situation where I would have to undergo another surgery, “return to the scene of the crime.” if you will, just for cosmetic reasons (even if it is “covered by insurance.”)  Unfortunately today, the option of having surgery for “cosmetic reasons” now has deep emotional/psychological trauma attached to it, yet I fear I may not be able to find peace with myself without a second surgery.

What I do know, whatever unfolds, is that I Will Not return to my previous providers, I Will seek out a surgeon who is aligned with my thinking, without a stake in the game, who can tell me the truth about what happened,  AND, I will make sure to remember that I alone know what is best for my body.

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Ironically, my pathology report came back indicating that I had pre-cancerous cells in my unaffected breast that would have developed into invasive breast cancer, providing me further validation of my desire to undergo the bmx, and that I do know myself, what I want, and acted in my own best interest in spite of the noise.  We should be able to trust our medical providers to listen and do the same on our behalf.

Published by Not Putting on a Shirt

Founder of Not Putting on a Shirt, a mastectomy patients' rights organization that advocates for optimal surgical outcomes for patients going flat.

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