As I write this, I am closing in on 9 months since I had a mastectomy to have my breasts removed.
In the time since that surgery I’ve suffered from constant physical pain and emotional confusion.
People tell me I am brave. I am not brave. I am tired and I am despondent about the way our medical system treats women’s bodies, including my own.
I am despondent about the way our medical system treats women’s bodies
Breast Cancer Diagnosis
It all started with the cancer found in my right breast during the summer of 2021.
After that, I faced many medical forks in the road, the first of which pertained to the type of surgery I would have.
Lumpectomy vs Mastectomy
Lumpectomy is a breast-conserving surgery where only a portion of breast tissue containing the cancer is removed. A mastectomy is when the entire breast is surgically removed.
Mastectomy made sense for me on a number of levels.
Mostly because I have the BRCA genetic mutation which made my lifetime risk of breast cancer 500% higher than the average woman’s,1, 2 and also gave me a much higher risk of recurring cancers.
Interviewing Breast Surgeon for Double Mastectomy
It made sense to have my breasts taken off, and since cancer doesn’t follow a schedule, I began interviewing breast surgeons and researching different types of mastectomy stat.
Flat Closure or Reconstruction?
I seriously considered breast reconstruction. But, along the way, as I continued to research, I realized implants were not the right choice for me, and I decided upon mastectomy with flat closure.
What is a Flat Closure Mastectomy?
With flat closure, the breast is deconstructed and entirely removed, then the tissue is tightened and smoothed out to create a symmetrical, flat chest wall.
Surgeons Often Question Flat Closure
For my mastectomy, I chose one of the top breast surgeons in the country, at a world renowned university.
Flat Denial: When Doctors Favor Reconstruction
As I look back, it becomes apparent that “my doctor never mentioned that going flat was an option.”3 I figured it out on my own and asked her for it, but I’ll get to that later.
Mild Flat Denial
According to Katrin Van Dam, author of Flat and Happy, “This omission during the surgical consult is regarded by researchers as the mildest form of a phenomenon called flat denial.”4
UCLA Study on Flat Denial
As an aside, in a study conducted by Dr. Deanna Attai, a breast surgeon at UCLA, over 20% of women who ask for flat closure experience flat denial.5
In fact, leading women’s health expert Kim Bowles coined the term “flat denial” when her surgeon unilaterally implemented his own ideas about her mastectomy after she made clear, both verbally and in writing, that she did not want implants.
When Flat Denial is Medical Battery
As Bowles lay on the operating table, drinking in the anesthesia, her surgeon told her, I’m just going to “leave a little in case you change your mind.” She woke up with empty sacks of skin ready for future implant surgery, in direct violation of the flat closure she asked for.
A woman with cancer undergoing an amputation should not feel like she’s being roofied at a frat party.
Medical Betrayal
Bowles has dedicated her life to flat closure advocacy, determined to turn her pain and medical betrayal into progress for others. Her website Not Putting on a Shirt, is a must visit if you’re having a mastectomy.
A woman with cancer undergoing an amputation should not feel like she’s being roofied at a frat party
My Surgeon and Mild Flat Denial
When I met with my surgeon to discuss my upcoming procedure, she did not offer flat as an option.
I had to let her know that I wanted to “go flat.” In turn, she questioned it extensively, which did not seem to indicate a problem since this was a very permanent decision.
Planning for Flat Closure
While we spent quite a bit of time discussing whether or not to reconstruct my breasts with implants, she was far less interested in fielding my questions about flat closure and hurried the conversation along somewhat dismissively.
Flat Closure and Scar Patterns
I continued attempting to get answers from her on a number of potential outcomes, including the types of scars I would be looking at every day for the rest of my life.
Buyer Beware: the Start of my Mastectomy Nightmare
Her initial response was a nonchalant non-answer.
When I asked again, she stated: they’re going to be big scars, and you’re not going to like them.
I should have run the other way.
Her peculiar behavior did not stop there.
Disregard for HIPAA
The surgeon then identified one of her patients to me, sharing a name and photo, breaking doctor-patient confidentiality.
I should have run the other way
This may not seem like a major issue, but trust me, you want a surgeon who follows standard operating procedures because if they don’t, it’s a sign that bigger mistakes may lie ahead.
The Grind of the Cancer Industrial Complex
In retrospect, everything is glaringly obvious, but at the time, I was not feeling like myself, dealing with cancer on top of MS, celiac disease, and more.
Beyond that, the machinery of the Cancer Industrial Complex just grinds you down.
Warning Signs
I now realize I should have canceled this operation when the surgeon displayed the tiniest bit of impatience and disregard in our conversation about my surgical outcome.
Putting Breast Cancer Behind Me
We all know, though, that twenty-twenty hindsight is everything because when I look back on the mastectomy, I recall that I was full of hope and so ready to put the entire shitty cancer experience behind me.
Post Mastectomy Joy
Along those lines, when I woke up from surgery in February 2022, I had a huge smile on my face.
Unfortunately, my relief had a short half-life.
The Big Reveal
After surgery, when I peered down into the bandages, a lopsided, hollowed-out result stared back at me.
A Painful Trench of Skin and Bone
Odder still, was that while the left side, the side with cancer, had a chest wall with a smooth outcome, the right side, which I had elected to have removed in a prophylactic mastectomy, was a little trench of painful skin and bone.
Unfortunately, my right armpit was also rearranged without explanation.
Hollowed Out
My healthy chest wall was hollowed out.
I gave my breasts, the ones that fed my babies, to the Gods of Cancer willingly, but the surgeon took my chest wall without my consent.
Stage 1 Cancer vs Living with Pain Forever
As I write this, I have a number of mastectomy-related medical problems on the gutted right side of my chest that have not been addressed since my procedure.
I have lived in pain all day, every day, for 9 months.
Pain Changes You
Living in pain changes your brain.
Living in pain changes who you are.
You feel like you’re stuck in a moment that will never end.
No Good Choice
I am truly heartbroken to say that having stage 1 cancer was less of a burden and far easier than dealing with a nightmare mastectomy result.
When I had breast cancer, I had no pain, and I was filled with the hope of many treatment options.
Bad Mastectomy: Haircut Will Never Grow Out
But now, I have a bad haircut, and it is one that will never grow out.
One Chest, Two Different Operations
Two sides of my chest, two different procedures. One major injury. Zero explanations.
We Can Do Better Than This
Is this how we treat a woman after she’s suffered from cancer and had an amputation?
When Cancer Tears You Apart…
According to Kim Bowles, “The only real matter of choice in the whole cancer treatment process is the reconstruction decision, to take this choice away is cruel and avoidable.“
…And Your Choice is Taken Away
When cancer tore me apart, I wanted some say in how I was put back together.
I did not get that.
Charlotte says
Elana, thank you for sharing your heartbreaking story. Your courage in sharing your story will help many others who are and will be in the future, faced with having to make a choice. I sincerely hope that you find some relief and am sending healing love and light your way. My heart hurts for you.
Elana says
Charlotte, thank you for your sweet comment and healing love and light –sending that right back to you.
Joanna says
Elana, no fair. I’m so, so sorry you’re suffering like this. I experienced something similar and to this day, I say that it’s like being raped. I hope that somehow, your pain will fade and eventually, disappear. My right and left sides are totally different, and it’s something I’ve learned not only to live with, but to love because it’s my beautiful body–it took a long time though. But it didn’t have to be this way, and surgeons should do their best to honor to the agreements they make with patients before putting them under.
Most of all, sheh t’hiyeah briyah.
Elana says
Joanna, I LOVE everything about your comment. And yes, doctors need to honor their agreements with patients, that is a basic human right when it comes to surgery. Thanks for sharing your wisdom here.
Erin Buchanan-Lettiere says
The medical profession has veered so far off course and in so many instances (like yours) failed the patient due to outside pressure from the norms of society, big pharma, etc. It’s sickening and terrifying for anyone who is facing major medical challenges.
I am assuming the photos shared in this post were recent breast-less pictures. I think you look perfect!! I sincerely hope the pain dissipates quicky and that you are fully able to bury that part of your life. As a fellow flat chested woman (mine is genetic) I praise your honesty and hope you are able to embrace the ease of no bra needed!!
Best of luck to you!!
Elana says
Erin, I could not agree with you more, “the medical profession has veered so far off course.” Well said and thank you. I am looking forward to, and hoping for pain-free, bra-free days ahead. Still wearing a bra as I need compression for the pain :-(
DamselflyDiary says
I would have thought that a female surgeon would have much more sympathetic and worked harder to give you a good outcome. I always choose women medical providers if I possibly can. But your experience shows that isn’t a foolproof strategy.
I am so sorry for your result. I am in constant jaw pain because of orthodontia as a child. It wasn’t really my choice and long term affects weren’t known at the time. This on top of fibromyalgia has left me with a lifetime of pain and fatigue. Pain is exhausting. Trying to treat it is exhausting too. It isn’t a journey I would send anyone on.
This may be totally unrelated to your issues but I saw a PT once that did cupping for mastectomy patients who had scar tissue adhesions to their chest wall and resulting pain.
I wish you only the best.
Elana says
Damselfly, thanks for your comment and kind words. I have been receiving cupping for years and love it. I have hard cups that I use on my neck and legs and do soft cupping on the mastectomy area too. So sorry to hear about your orthodontia pain.
Yvonne Travers says
I am so sorry to hear what has happened to you. How can a doctor be so insensitive. Please know that I will praying for your healing, peace and comfort. Your story will help many woman who will be dealing with breast cancer.
Elana says
Yvonne, appreciate your support.
Joan Seliger Sidney says
Please visit my websteElana, What a mess your ego-centric doctor put you through. CAN YOU FIND oops a good doctor to repair it? Hard to accept “.no.” Are you using medical marijuana for pain? So sorry.
Elana says
Joan, my best friend own a MM factory :-)
Ilene says
Elena, Thank you for your bravery and honesty. I am furious and sad in equal measure. Though I thought I was attuned to the myriad ways in which women are mistreated, denied voice and control over their bodies, and gaslighted in our world, I have to admit that I had no idea that this also played out when it comes to breast cancer surgery. (And that your surgeon was top in her field and a woman to boot-unconscionable!) Your experience and the research summaries and links that you shared were radically eye opening. I will be sure to share your experience and research with others and keep it close should I ever find myself forced to confront breast cancer directly. I’m so deeply sorry about what you have gone through and only hope that your physical pain starts to be mitigated soon. The emotional pain, I appreciate, is even more durable. Sending you love and gratitude for your herculean efforts to help others.
Elana says
Ilene, thank you for your tremendous support, I really appreciate it.
Amanda says
There are just no words to say how sorry I am that this happened to you. I’ll add this to my growing list of the many ways women’s bodies are harmed by a medical system that is rooted in misogyny and profit. Having been a nurse for many yrs, I’ve seen first hand how women, especially women of color, are treated. Unfortunately, nothing surprises me.
You’ve been such a great resource for so many people and now it’s your turn to be supported. Thank you for writing about your journey.
Elana says
Amanda, thank you for your words of wisdom and for bringing up the fact that white women like myself receive excessively superior medical care to women of color. Given the level of services I myself received during the breast cancer experience, this is terrifying. Very much appreciate your perspective on this situation given your position in the medical field. Thanks for your service to those like myself, and your support here on my website.
Kristina says
Dear Elana, Thank you for sharing your experience with us, despite how horrible it has been for you. You have created a powerful PSA for those of us who may be faced with the same decisions one day. It’s so upsetting how even those of us who are savvy and strong willed get sucked into trusting incompetent doctors despite our own misgivings. My sincerest hopes that you find solutions for your pain.
Elana says
Kristina, thank you for your comment. There is nothing that could make this experience silver lining worthy, but it gives me a small measure of comfort to be able to let others know that this is happening to 1 in 5 breast cancer patients who opt for mastectomy with flat closure, and that we need to be very, very careful when we enter the Cancer Industrial Complex. It pains me to think that anyone else would ever go through this unnecessary type of experience.
Lori says
Elana, thanks for sharing your heart-wrenching story. I hope you find relief from the pain and injustice you have suffered, and I wish you peace, comfort, and healing as you navigate your way to a better future.
Elana says
Lori, thanks for your support, really appreciate it.
Katie says
Dearest Elana, I am so heartbroken for this situation that was thrust upon you. It is incredibly unjust. I am praying that you will be healed and delivered from the senseless pain and trauma you are navigating. I have no other words other than your grief is valid.
Elana says
Katie, thank you for witnessing me here. I believe the healing can begin when we start to tell our stories.