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.
Ann says
Hi Elana, I am so sorry to hear about what happened to you and I hope you are feeling and doing much better today. As a woman, I definitely think that medical science doesn’t accurately treat us regarding many medical problems (such as heart related diseases), and I wish there was a way/forum for women to guide each other and present an authentic and honest depiction of their medical experiences. A colleague’s mother in going through the same predicament and has reached out to a nationally aclaimed doctor in NYC and I worry if she is the same you spoke about. Only if you are comfortable in sharing their state or more in private, would really want to know who to avoid. Thanks.
Elana says
Ann, I am so sorry to hear that your colleague’s mother is going through this. I would be very careful regardless of the physician when it comes to flat closure mastectomy, there are studies that 1 in 4 are botched, but anecdotally speaking it seems that it may be a bit higher than this. If I could do it all again I would go to a surgeon who is very experienced in FTM surgery.
Brandi Mackenzie says
I am so glad you’re sharing about this! My mother had a terrible surgical experience that left her with 7 surgeries before getting her post mastectomy closures “right.” And, I used to work with many women on pre-post BC surgical nutrition‚ so I’ve heard a lot of stories. While this is not something I personally have experienced, I know it’s more norm than not. I have a wonderful manual therapist that I use for breast health and her specialties are in scar tissue, fascia, and lymph. I call her magic hands, she is so gifted. She is in Boulder if you want her info, please let me know.
Elana says
Brandi, I am so sorry to hear about your mother. Yes, would love the name of your manual therapist.
Karen Tressler says
I couldn’t even get decent responses to my questions about a basic shoulder surgery. The surgeon was so sure it was menopause that he scheduled an ‘exploratory’ laproscopy only to find that the cartilage was 100% detached. He couldn’t do the surgery required because the surgery room schedule wouldn’t allow it to fit in and he was leaving for another country for ten weeks and it couldn’t wait…so he did a half job of tacking it in place. Decades later it’s giving out and I’m faced with the entire thing again. I absolutely cannot even imagine how horrific your experiences have been. This nation’s obsession with other women’s bodies in unhealthy ways knows no limits it seems. Thank you for sharing your experience and giving us all some ‘thinking’ we need to do in advance of ever possibly being diagnosed with this. You sharing your light with the world is a gift that should not be necessary and I am so so sorry for your experience. You deserve better. Women deserve better.
Elana says
Karen, I am so sorry you’ve been through this with your shoulder, it is awful.
Janet Cotton says
Hi Elana,
I had the same surgery as you and they left me with a protruding Flap under each arm. It looks like side boobs! I also have the skin and bone pain where the cancer was on my chest wall. I literally feel my rib bone and it is painful. I also get this strange cramp just under the incision (under where my breast would have been) and it stops me in my tracks if I move a certain way. I could have gone back in to have those corrected but after chemotherapy, surgery and radiation and then Lymphedema set in my right arm. The lymphedema also extends to my upper back and is painful. I decided I am done with surgery and pain. I now have to wear a compression sleeve on my right arm for the rest of my life. It’s barbaric what the health industry does to us. I sympathize with you. Take care!
Elana says
Janet, I am so sorry to hear that you’ve been through all of this.
Liz says
Elena, thank you for sharing your experience, although it continues to be a painful one. I was also diagnosed with Stage 1 cancer in my right breast. I was also caught up on the Cancer Train, being railroaded into reconstruction. I was not a candidate for flap reconstruction and I was not comfortable with the failure rate of implants. But bo one offered flat reconstruction. Multiple miscommunications led to my plastic surgeon deciding he was no longer needed and my breast surgeon being angry with me, saying if I left closing up after breast removal in her hands she would leave me looking butchered. I am so thankful for the staff. I was devastated. They got me back in with the plastic surgeon. He insisted on leaving a little loose skin “just in case” I might later want implants. But other than that he did a beautiful job, leaving smooth unscarred flat skin on my right side. I do have a “dart” on my back, but Covid got in the way of fixing that. The law mandates all women be given the option for a plastic surgeon for any form of reconstruction they choose following a mastectomy. I wish more women were aware of that option.
Thank you for all the good you do. I have several of your cookbooks and have been reading your blog for years. You are someone who makes the world a better place & I am grateful for that.
Elana says
Liz, thanks for your comment, I really appreciate. I’m so sorry that you too have been treated poorly by some of the doctors who run the Cancer Industrial Complex.
Gayle Friz says
I am full of sorrow for you and your sweet family. I am angry at your doctors. I am angry at the health care system. To observe an intentional, intelligent, conscientious person such as yourself receiving such a level of blundering care (at the least) is maddening and unconscionable. I am at a loss. I am grieving for you. I am disgusted with the system.
You have helped and served so many. You have brought healing and joy to so many. I mourn with you. My prayers are with you.
Elana says
Gayle, thank you for your kind and thoughtful words.
Barbara says
So sorry Elana to hear of your continuing struggles. Thank you for being a light and raising awareness about this important issue. I always learn so much from your posts. Keeping you in my prayers. Much Love to you and your family. Happy Mother’s Day!
Elana says
Barbara, thanks so much for your support.