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.
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.
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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.
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.
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.
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.
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.
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.
My heart goes out to you… An eye opening heart breaking story on your painful journey.
As you say pain changes your brain.
Shame on these surgeons that change your life forever and taking choices away!
I admire your openness and strength.
Be well Elana
Linda, thank you for your words of support, i really appreciate you.
I am so sorry to hear of your pain and yet another instance of the MDs not listening to women and robbing them without their consent. It’s so damn angering!!
Terri, it is damn angering. Well said.
TERESA BIELAK says
So sorry your going thru this. Have you ever heard of Dr. Henry Bieler healing soup. My Homoepathy doctor suggested after my gallbladder surgery. I will share his recipe. https://www.google.com/search?q=dr+henry+bieler+diet&oq=dr&aqs=chrome.0.69i59j69i57j46i39j0i67l2j69i61j69i60l2.9341j0j7&sourceid=chrome&ie=UTF-8
https://pamelasalzman.com/bielers-broth-a-healing-restorative-soup-recipe/ Read the review are very interesting.
Stay healthy & positive.
Nikki, thanks for sharing your thoughts here, and I’m so very sorry to here about the horrific “care” your daughter has received. I hope you’ll stay in touch and keep me posted on how both of you are doing.
Jill Scribner says
Elana, I am so sorry.
Thank you Jill.
What disappointing medical care. Thank you for writing about it–it’s a service for all of us. Maybe you’ve heard of Sharsheret? I don’t know if they could help you. https://sharsheret.org/
Dodi, thank you. Love Sharsheret and mention them in this post:
Great organization that I hope to become more involved with. Thanks for mentioning it here .
Dora Wellings says
Take ❤ care. Sorry to hear this. I am lucky there no breast cancer on my side. Only if we knew why some women get it. Men can get it too. Xo
You have been on my mind since your last post and I’ve been wondering how you are doing. My heart breaks for you and all you are going through. I’m so thankful you are sharing this information. I pray to never need it, but if I or a loved one do, I will have a trusted source to turn to. My prayers are with you as you navigate this. I pray you find healing and peace and comfort and answers.
Lisa, thanks for your support –so grateful for you.
Oh Elana, I had no idea that this had become what it has for you. It’s not fair that besides dealing with the cancer itself, you have to deal with the aftermath of a crappy surgeon with crappy care. I will FOREVER remember your story and share with whomever this possible surgery lies. No one ever provided any explanation as to why one side was so badly injured in comparison to the other???? I don’t understand how a doctor, let alone a prestigious one, can let this slide by without any thought whatsoever. Just thinking about this makes me really mad…..
Natalie, yes that is the case. In fact, we just discovered that I have “dog ear” and reached out to the surgeon through the portal and neither she, nor anyone in her office has responded to us –it has been 14 days. Here is more information on dog ears, in case you ever have friends that seek flat closure mastectomy:
Please do reach out if you or yours have any questions.
Thank you for sharing this, I had no idea what people go through. My mom is a breast cancer survivor 19 years and a few months. She had a lumpectomy. I am saving this for friends, family, myself.
Michelle, I hope this will not happen to anyone else. Thanks for spreading the word to protect others.
LayLa Benson says
Thank you for putting on the brave face and sharing your story. I am a hairdresser and unfortunately I see women deal with breast cancer so much. It’s hard and heartbreaking. I have always said if I am ever the one diagnosed I will not be doing reconstruction. I didn’t know how much there is to know about that. I’m praying for your mind and body to improve and for your voice to reach many ears. ❤️
Layla, what a wonderful comment. Thank you ❤️
I am sorry for your pain and you are in my thoughts. Have you found anything to help the neuropathy?
Anne, I stretch, lift weights, work with bands, roll on massage balls, apply ice, do cupping, massage it, apply a mixture of THC + CBD oils, apply arnica oil, rose hip seed oil, calendula oil, st john’s wort oil, diclofenac cream. Having the subcutaneous fat that shields the muscle and bone removed has left a hollow trench which is painful. It is also painful to move my arm since my armpit was rearranged and, I’ve been told by both a doc and PT, sewn up too tight.
This is horrible. I believe I had a friend who had flat scar mastectomies in the 90s. I could be wrong. It astounds me that we are going backwards in women’s healthcare. And I am so, so sad this happened to you. THANK YOU for sharing your story so we can be aware and informed for ourselves and those we love.
Diane, thank you for your support, i really appreciate it.