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.
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.
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.
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.
Ragna says
I am so sorry and shocked to hear this. I literally had to do a double take to see whether this was really you because that just seemed to much to handle at such a young age when you had been working so hard on your MS and Celiac. I don’t know what to say besides that my thoughts are with you and that I wish you only the best. Peace, love and healing.
Elana says
Ragna, thanks for sending over the good vibes –need ’em.
Betty says
Elana,
What a heart breaking story and ongoing burden. I admire your courage and grieve for your discomfort. Sharing your experience provides a great service to the women who you reqach.
On a positive note, I love your recipes especially the sesame crackers.
Betty
Elana says
Betty, it is heartbreaking that this could happen to anyone –every day in the mastectomy groups I’m in on Facebook, another woman pops up with a result that is completely surprising and not at all what she agreed upon with her surgeon, many like me, are also in pain. I’m so glad you are enjoying my crackers –we love the sesame too!
Leah Vopnford says
Thank you Elana, for once again sharing your journey. It makes me sad you were treat this way and are living in pain. Although I’ve had a handful of good caring doctors, most scare me. Sending prayers and healing vibes your way.
Elana says
Leah, thanks so much for the prayers and healing vibes.
Joana says
Elana, I don’t have words to express my feelings for what happened with you, but wanted to write and thank you for sharing your experience. May it bring awareness to other women and give you some comfort and much love from your readers. With gratitude
Elana says
Joana, sending you hugs and gratitude.
Marilyn says
Elana, I have been following you a number of years. Ever since you’ve posted about your cancer, you’ve been in my thoughts. I guess I was so surprised that someone with as clean a diet as yours, and so active, got cancer. But then, where would you be now if you didn’t do those things…so sorry for your pain….thank you for warning the rest of us. Your story continues to haunt me and I so hope you will find some relief!!!
Elana says
Marilyn, thanks for your comment. Did you know the EPA has 80,000 industrial chemicals that are registered but that have not been studied for their toxic effects? A clean diet is great, but will only go so far when the world outside our doorstep is a toxic soup.
Leonora says
I suspect that there is more monetary profit to be had for the medical industrial complex when implants are chosen.
Elana says
Leonara, yes and no. Yes, the teaching hospitals make more money when more complex surgeries are done. No, in that the surgeon does not necessarily have direct financial gain in an academic institution. The issue is that many big pharma companies, and I would imagine implant manufacturers, sponsor the conferences where docs get their necessary CMEs and likely these commercial for profit companies are dictating the curricula of the physicians’ education. That is a very big problem.
Micky Shorr says
I am so sorry about your experience and appreciate your generosity in sharing it with other women. I had colon cancer in 2005 and consider myself lucky to have received decent care although I do suffer nerve damage and pain from the chemotherapy. Best wishes for a lessening of your pain.
Elana says
Micky, thanks for this comment and all the other wonderful comments you’ve left me over the years.
Teresa Fischer says
Dear Elana,
You have been such a blessing to me for many years now. My copy of The Almond Flour Cookbook is well worn and used regularly. I am so sorry that you are going through this horrible nightmare. I pray that God will give you healing and freedom from pain. Much love to you.
Elana says
Teresa, thanks for sending love –I’m sending it right back to you.
Yael Cohen says
Elana, I am horrified to know of what happened to you and that this is even an outcome. As someone who had a lumpectomy earlier this year, and assuming all is ok but also holding my breath knowing that a mastectomy could be in my future, I am so grateful you shared – as I am now knowing to mention it to other women. I am praying for you that you will find relief and a Refuah shleimah soon in your recovery. Hugs to you.
Elana says
Yael, so sorry to hear about the lumpectomy. I hope you’ll stay in touch and let me know how you’re doing. Thank you for your prayers.
Danielle says
Elena, thank you for sharing your story. I’m so sorry this happened to you and that this happens at all. If you have not already, and if you have the energy, please consider writing letters to the hospital board, patients advocate organizations, even your state senators. This is not okay and doctors should not get away with doing this to their patients when they are at their most vulnerable.
Elana says
Danielle, thanks for bringing this up, we cannot let this happen to other women.