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.
Elana, I am just seeing this now as I has stopped reading all blogs during Covid. I first want to offer my sorrow of your unacceptable, despicable medical experience resulting in this outcome. I work in healthcare and am appalled at what it is becoming. If you can find a breast cancer certified physical therapist in your area, it can help a lot with pain management in the most gentle of ways. If you would like help in finding someone qualified in your area, feel free to reach out to me.
Laura, thanks so much! I have seen 4 of those already :-(
Judy Halpain says
Hi Elana, Your experience touched my heart. Right now I’m facing 6 weeks of radiation. That is the only way my surgeon (very good one) would do a 3rd lumpectomy. I didn’t want radiation when the 2nd surgery was done in 2017, but now I will as that is the only way to not have a mastectomy. After this 3rd lumpectomy my right breast looks so different, and breasts treated with radiation usually shrink. Both my surgeon & a plastic surgeon said I was too old (76) for any kind of implant as it would be too risky. I don’t have the BRCA issue. I’m very sorry for the pain and other issues you have experienced. I use Alpha Lipoic Acid supplements for pain in hands due to aging and some joint pain, and it helps, but I’m not sure it would help with breast pain issues. I also use many essential oils for pain. I’ll surely be praying for you. Thank you for the great recipes as I need to be on keto desserts now due to blood sugar issues and can no longer use honey or maple syrup. I find that the erythritol with prebiotic oligosacchariides or monk fruit works okay for me. God bless you. You are in my prayers.
Judy, I’m so sorry to hear about all that you’ve been through. Thanks for your kind and thoughtful comment, for the reminder on ALA, and for keeping me in your prayers <3
As a N.Z. woman of nearly 83 yrs old & soon to have a L mastectomy due to invasive lobular carcinoma, reading the many comments about/re your own experience is indeed DAUNTING!!
The “health”/medical system in N.Z. is very different from that of the U.S.A. but even so, reading of your & other women’s experience has left me wondering ….
Isabel, thanks for your comment –it is daunting.
Susan C. says
Praying for you.
Susan, thank you.
This might be of interest, if just for the photo about half way down the post. https://saranash.medium.com/when-boobs-go-bad-9de8a3ef7f
Karen, thank you so much.
Thank you for sharing your story. Hearing how you were treated brings tears to my eyes. I admire your courage and honesty. I appreciate all of the things on your site and want you to please know how you sharing is helping others. Best wishes as you continue to heal!
Mikala, thanks for your kind words and your support, I appreciate you being here!
Thank-you for speaking honestly about your experience.
It makes me sad, and angry, that womens’ questions, opinions and thoughts about our bodies are often dismissed by the medical establishment.
Cheering you on, with respect and admiration.
Aviva, great comment! I needed to hear that today.
Michelle Duval says
Couldn’t figure out how to comment directly but wanted you to know that my sister made the same decision to go flat. Unfortunately it was a general surgeon and not plastic surgeon that did the surgery and she was left w a large flap under the armpit that became red and angry over time. She eventually was scheduled w the original surgeon to have it removed and when they did so they pinched off the skin and now she has a nipple like gather on her back. A gong show to say the least. Her scars have been painful as well.
I am a Bowen therapist and also do scar work (MSTR). These treatments have helped her exponentially in softening the scars and releasing pain as well as ROM has increased. I highly recommend you try these therapies. You can contact me directly and I can help you find a Bowen therapist in your area.
Thanks Michelle, I have not received Bowen for such a long time this is a great reminder. Right now doing a ton of skin rolling, cupping and fascial work –on what is left of it, they took off a lot of fascia and it looks like other unnecessary components as well.
Aileen Wolfe says
Elana, I am so sorry to hear of your pain and experience with an uncaring surgeon. When ever I have had health issues, I have come to your site for your recipes and ideas. I hope your pain lessens with time and that you find a doctor that can help in some ways.
Aileen, thanks for your caring words, really needed to hear them today.
Elizabeth R says
Elena, I’m so incredibly sorry you’ve gone through this and still endure it every single day. My heart goes out to you. Thank you for sharing your story and thank you for all that you do and have done for years. You have and still are changing peoples lives and I know you’ve helped me. Much love.
Elizabeth, thank you. I really needed to hear that today <3
Add me to the list of folks who are so sorry, so angered, and so full of love and blessings for you. Even in your pain, you are educating people. And your recipes all help us on our healing journeys. Thank you. May you be free of pain very soon.
Pamela, thank you for your kind words and for being part of my online family.