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.
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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.
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.
Donna says
Hi Elana,
I’m so sad to hear your story. it’s just not good enough is it!! I too had a female surgeon who has been quite flippant with her answers. I had a double mastectomy in May 2021 with flat closure.
This year I had what was supposed to be minor surgery, to tidy up a lumpy section on mastectomy scar that was rubbing when I walked and swung my arms.
I have had all sorts of problems since this op and have chronic pain, 24 hours a day.
You’re so right, chronic pain changes your life and the person you are.
I just want to send you a big hug. I hope with time things improve for both of us and that breast surgeons begin to realise the negative impact that they’re having on our lives through not taking the time to listen and the utmost care whilst operating.
Thanks so much for sharing, you have given me more motivation to fight the outcome of my surgery.
Elana says
Donna, thanks for your sweet, sensitive, and revealing comment. I’m so sorry to hear about all that you have gone through. I wonder if that lumpy section of the scar that rubbed when you walked was a dog ear. I have one of those. This generally is a result that occurs when a surgeon does not understand the geometry of removing a breast and closing up the site. Here is a video that clarifies how to do it as well as what can go wrong:
https://www.youtube.com/watch?v=bxWwrJGJYkk
Where was your surgery (which state?) I’m curious if we had the same surgeon.
I hope you’ll keep me posted on how you’re doing and please let me know if you have any questions as you continue searching for answers and solutions when it comes to your surgical result.
Hugs,
Elana
Nikki says
Thanks for sharing. Soo many things come to mind.
My daughter has EDS, POTS, Gastroparisis, MCAS and PCOS. The “medical care” has been atrocious. She’s been labeled all sorts of things, gaslight and generally ignored all while slowly dying physically, mentally and emotionally.
My other thought is why in a time that they the medical community will gladly change the sex of a child, will they not allow a grown woman to advocate for herself with the type of life saving and necessary surgery. That clearly spent thoughtful time researching it or wouldn’t have known about the surgery to begin with.
Hindsight is painful and thank you for sharing your story enough to support making our decisions for ourselves and walking away from the all knowing doc when it feels off.
May you be blessed in your healing journey.
Karen says
Elana,
I am so sorry to hear of your experience. It is not acceptable that women are not respected and their preferences weighted properly. Nothing I can say will make this ok, nor can I ‘fix’ the problem, but I will share this post with others that they may benefit from your experience. Thank you so much for sharing and for being so vulnerable with your story. I send the best possible wishes.
Elana says
Karen, thank you, appreciate your support.
Christy Texeira says
Elana,
Thank you for sharing your story and for being so candid in doing so. There are a number of friends that I will be forwarding your messge onto. Telling our personal stories is one of the most impactful ways of letting others know they are not alone. All of our journies are different, but the aspects that are relatable serve as the tether that holds us together.
Though you may disagree, sharing your personal experience is brave. Thank you for being a voice that obviously needs to be heard, because “the professionals” are not speaking up.
Elana says
Christy, thank you for your incredible words of wisdom.
Deb Kinney says
Thanks for writing this powerful piece on the medical world and the disregard held for women’s choices.
I too hope daily that you find relief from the pain caused by this surgeon.
Elana says
Deb, I could not have summed this situation up any better myself:
“…the medical world and the disregard held for women’s choices.”
There are so many other women out there who are so much less fortunate than I am, it is heart breaking to think of every woman going through this.
Mary Ellen Cotter says
I am so sorry Elana after all you have endured you continue to have daily pain. I would not rest until you find a doctor to address this situation. Please do not lose hope and continue to seek the help that is out there somewhere.
Elana says
Mary Ellen, I am thrilled to hear from you and hope to see you soon. I have seen over half a dozen PTs and also been visiting doctor after doctor to better understand what happened to me and to find a solution. I will not give up.
Theresa Jelliffe says
Elana you are still an ever-more beautiful woman and very courageous. Life is so unpredictable, very challenging, and you have inspired all who know you. Keep the faith. God loves you & always will. You are His daughter!
Elana says
Thanks Theresa, appreciate your thoughts.
Susan Shaver says
Elana, I had a mastectomy on my right side, and chose to have reconstruction after being convinced by the doctors I would look beautiful. It almost killed me. I ended up in a hospital for 5 weeks on every known antibiotic, even IV trying to keep me alive after a massive infection. I had to have the ‘reconstruction’ removed, and now have a chest that looks like something awful from Mars with horrible lumps and scars. A friend of mine also had to have a mastectomy on one side, and she also listened to her doctors who convinced her to have reconstruction. Hers also failed. Hers was on the opposite side. We call each other the “Boobsie Twins”. I am beginning to wonder if they get big bucks for reconstructions, and are paid even if they fail and almost kill the patients. I am very unhappy with the medical establishment breast cancer doctors!
Elana says
Susan, thanks for this comment and all of the other amazing comments you’ve left on my website. Big Pharma (and I include medical device companies in this umbrella term) control much of the physician education curriculum. That’s why it took celiac decades to get on the map –no drug company made a pill for it so no docs were educated and there was little to no awareness of the disease. The mastectomy industry is similarly warped.
Kate says
Elana,
I am so sad to read about your experience. Absolutely heartbreaking on so many levels. You are using the incredible platform you have to help many other women..beyond what you will ever know. Absolutely praying for your pain..physically and the mental pain of this experience. Thank you.
Elana says
Kate, thank you for your kind and supportive words, appreciate you.
Karen Tintori Katz says
Continuing to pray for a complete refuah shelaymah. Thank you for educating women. I wish I had a magic wand to take away your pain. I hope you are considering malpractice procedures. Seriously. May the coming year bring you only health and sweetness.
Elana says
Karen, thank you for your suggestion. Right now focusing on pain and solutions, but I may need two more surgeries to correct the trench in my chest as well as the rearranged armpit. This is very frustrating to me since I went flat to avoid more surgeries and the impacts of general anesthesia on my MS. Please let me know if there is more you have to say about malpractice, etc. it is not something I’ve looked into.