Photography by Joe Friend and Caroline Miller.
Just over two and a half years ago, in February 2022, I had a double mastectomy because I had stage 1 breast cancer.
I was diagnosed with the BRCA genetic mutation more than a decade prior to that.
Flat Closure Mastectomy
For those just joining the conversation now, I chose to go flat, forgoing prosthetic breast implants, for my double mastectomy chest wall closure.
Mastectomy Update
Sadly, I’ve sustained injuries from the flat closure mastectomy surgery.
To address this, I am doing daily home PT.
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Outside of my home I have seen a variety of skilled professionals for rehabilitation. My treatment ranges from oncology PT to fascial trains work, cupping, and more.
Painful Scarring
I am in treatment for two types of pain. The first, a constant and severe burning, itchy feeling in the mastectomy scars, which are keloid.
Keloid Scars
A keloid scar is similar to the scar from a severe burn. The damaged tissue is no longer supple. It is tough and immobile. Inflamed, the scar grows thick and rubbery.
After my surgery, I first heard of the term, “scar maker,” the idea that it is due to the patient’s own biology that their incisions do not heal properly.
This conveniently places the blame on the patient.
Incisions Under Stress
But when I looked into the medical literature, I found that keloid scar formation risks include “local factors” such as increased “tension on the wound,”1 i.e., when the surgeon sews the mastectomy incision too tightly.
This puts the skin under stress, creating an inflammatory process instead of allowing healthy new skin to form2.
I have had a number of surgeries prior to the mastectomy. I had lumpectomy surgery, a lymph node dissection, as well as surgeries on other parts of my body.
Surgical Wound Healing
In each of my prior surgeries, my wounds healed well. I haven’t scarred this way before.
My primary care doctor examined my mastectomy scarring and shared his opinion that I am not a “scar maker” but that it looked to him that the scar pain stemmed from poor stitching done with too much tension.
The scorching pain is a constant physical reminder of my loss.
Chest Wall Pain
The second type of pain is on the right side of my chest.
The surgery on this side was prophylactic, i.e., there was no cancer in that breast, but I wonder, was chest wall muscle removed?
Quarter Pounder?
It’s hard not to wonder about it when you peer down at your chest, and it looks and feels like the equivalent of a “quarter-pounder” meat patty is missing.
Pectoral Muscle Removal?
I’m not a doctor, but I wonder if muscle may have been removed because I can’t move my arm the way I used to, and my hand is cold and sometimes numb.
You can see in the photo above that this side is indented compared to the left side, the side that had cancer.
Physical Therapist Told Me…
My PT, whom I’ve worked with for several years and knows my body well, said it appeared to her that something damaging had been done to the right side.
Something’s Missing
More than once, when we met in the months right after my mastectomy surgery, she laid her hand on the right side of my chest and said, “something’s missing” in a serious tone.
A consulting surgeon who examined me also shared her view that the right side of my chest wall was carved out and that what remained of it was sewn up into my armpit.
Pathology Report Stated
And, my pathology report stated that the tissue that was removed contained skeletal muscle.
Mastectomy Recovery
Even more distressing is that I was told the mastectomy recovery would be 6 weeks. It has now been over 130 weeks since my breasts were removed.
Constant Pain
What this means is that well over two years after the flat closure mastectomy surgery, I suffer from constant chest wall pain, along with the aforementioned burning scar pain.
Not What I Expected
Another challenge is that the mastectomy results were not what I expected.
Prior to surgery, I requested and was told I could have a flat closure mastectomy 3. This procedure consists of three elements in the reconfiguration of the chest wall so that the desired result is:
Lopsided and Painful
But when I ripped off the bandages, an unexpected result, a lopsided chest looked back at me. This was a surprise.
Pay Attention to Details Prior to Surgery
Did you know it is possible that your surgeon may not always correctly identify which side your cancer is on? I did not realize this.
Surprises in Your Medical Records
I was disappointed after surgery when I reviewed my own records to find that the location of the cancer was repeatedly misidentified in those records.
The records also described details of the surgery that I didn’t understand would take place.
Take Day Of Surgery Seriously
Don’t waste time right before surgery when you are about to go under anesthesia.
Don’t joke around with your surgical team.
Review the Details With Your Surgeon
Rigorously review the details with the surgeon right then and there, i.e., discussing where the cancer is and exactly what the procedure will consist of.
I wish I had done this, and still have not forgiven myself for not engaging this way.
Who Will Perform Your Surgery?
Also be diligent when it comes to who will perform your surgery. Will it be a well trained, senior surgeon or residents (doctors in training4)?
Consent Forms
I would recommend that you watch the signing of this document by the surgeon so that you have a final opportunity to review it with him or her, and understand what will be done and who will do it during your procedure.
Surgery at Teaching Hospitals
I was disappointed to find that a junior doctor, who was still in a fellowship training, and three residents, even more junior than that person, were involved in my procedure.
My husband (who was at every appointment with me) and I, don’t recall anyone discussing with us how many people would be involved in my surgery.
It turned out there were six doctors present at my mastectomy surgery.
Be certain you know exactly who will be performing which parts of your surgery.
Too Many Cooks In the Kitchen?
Ask if there will be residents or fellows, and what exactly they will do –and don’t hesitate to insist that your surgeon not delegate these tasks!
From my perspective, surgery can be like cooking –it may not be beneficial to have too many cooks in the kitchen.
Your Right to Know
It is your right to know who will be inside your body with a knife and what exactly will be done.
Who Will Be Inside You?
As part of this, be especially vigilant about who will do what during surgery at teaching hospitals.
Informed Consent
According to the NIH, the definition of informed consent, is when a patient is made aware of the alternatives, benefits, and risks of a procedure.
It’s important that you get your consent forms well in advance of surgery and review them.
If you wish to, you should mark them up as with any legal document.
Breast Cancer Treatment System Incompetence
After my double mastectomy I spoke with numerous other women who went through flat closure mastectomies and did much of my own medical research.
I am frustrated by the many stories I heard about the incompetence of the breast cancer treatment system.
UCLA Study On Flat Closure
According to a UCLA study5, one in five women who go flat are denied the outcome they select pre-operatively, the one that is agreed upon with the surgeon prior to their procedure.
Breast Cancer Diagnosis
I was devastated when I was diagnosed with breast cancer. Then, I was terrified to have my breasts removed in a double mastectomy surgery.
My trauma was deeply compounded by my surgical result and my continuing pain more than two years after the surgery.
Medical Gaslighting
By denying our choices and our pain, the medical system attempts to silence us. We will not be silenced.
Language and Action
In The Cancer Journals, philosopher Audre Lorde says;
The transformation of silence into language and action is an act of self-revelation.
Audre Lorde’s statement above is a call to action, highlighting the need for change.
Normalizing Flat Closure
I am committed to normalizing the flat closure mastectomy procedure and making it an acceptable and easily achievable option for everyone who chooses it.
My Flat Closure Photos
And so I have shared these photos here with you of my flat chest; I wish it was not painful and lopsided, but for me, it’s still a better mastectomy closure choice than implants.
I also want to acknowledge the economic and heteronormative biases against flat closure.
I call attention to these cultural barriers to entry, as a means of increasing awareness and, ultimately, access to this safer and simpler breast cancer surgical closure.
Seeing Is Believing
My intention is that sharing these photos with you will weave our wishes for flat closure into the fabric of our reality. Because seeing is believing.
Flat Closure Mastectomy Pioneers
I am thankful to those with breast cancer who opted out of implants, choosing aesthetic flat closure mastectomy before me.
I feel great sorrow for your losses, and tremendous gratitude for your support, kindness, empathy, and friendship.
Thank you to these pioneers:
And I want to thank the other friends I have made who have shared with me the details of their own botched flat closure mastectomies.
Failed Flat Closure Mastectomy
I have sorrow for people who were taken apart during their mastectomies in ways that surprised them.
I hope the system can become more humane and transparent, delivering better results very soon for those who come after us.
Breast Implant Industrial Complex
When you try to get what you want, flat closure, and have a disappointing result it can feel like you failed in navigating the complexity of what I have termed the breast implant industrial complex.
Mastectomy Trauma: After Thoughts
Because my mastectomy involved having my boundaries emotionally and physically crossed so many times, it was important to me not to cross my own children’s boundaries in sharing these photos.
I had my boundaries violated repeatedly as a child, not by my parents, but other authority figures, so protecting my boys is critical to me.
I spoke with each of my sons and obtained their agreement to share the images here.
During this process, I offered to shelve the images and this project for a couple of years if either of my sons needed that time to get comfortable with the subject matter.
The Deeper Roots of Trauma
Trauma in families can be readily passed down from generation to generation, and it is our undeniable responsibility as parents to go out of our way to make sure that we do not burden our own offspring with our trauma.
I am blessed to have open lines of communication with my boys as we continue the ongoing processes of connection and individuation while I digest the trauma and medical surprises that were part of my flat closure mastectomy.
