By Deb Smalley
For years, I thought my breast cancer story was pretty generic—the typical tale of a mother of two tossed into physical and emotional survival. I thought it was a bit too easy and non-representative; I escaped without chemotherapy or radiation. I escaped, period. So far, I’m still here. But over the past five years and two additional surgeries, I came to realize there is a story in the details. And it’s not a pretty one.
I was born with a congenital defect of my heart called tetralogy of fallot. At nine months old, bypass surgery bought me time. When I was two, open heart surgery secured me a normal life. Right out of the gate, I owed modern medicine my life. Respect and gratitude for doctors, along with an appreciation for medical maintenance was all I knew.
A few days before Christmas 2014, after my first routine mammogram, I was diagnosed with breast cancer. I was forty years old. My children were young; Jack was nine and Lydia was seven. My husband Bob had taken care of his mother during her own bout of breast cancer. The diagnosis turned our world inside out.
For the next month and a half, my full time job was cancer. Doctor appointments, tests, more tests; all while trying to maintain a level of normalcy for my family. While my life was hijacked, I wanted theirs to be stable. I went to a lot of appointments alone, wearing my husband’s cologne to feel his presence. Time sped by in a haze and yet felt frozen still.
My breast surgeon was the surgical director of a prestigious university hospital in Philadelphia. He laid out all my options: lumpectomy with radiation, removal of the affected breast, or bilateral mastectomy. My decision was made the second I was diagnosed; I wanted both breasts gone. I needed to be as aggressive as possible as to not constantly fear a re-occurrence. I told him definitively, I want a bilateral mastectomy. Specifically I said, “I want to Angelina Jolie it.” He responded without skipping a beat. He would only do the bilateral mastectomy if I reconstructed because I was “too young.” At the time, that caveat didn’t strike me. It was presented as the typical course of action. Naturally, you reconstruct. I didn’t get a second opinion. I trusted my doctor. I didn’t do the research. I just wanted the cancer gone and that was my focus.
One thing I learned since was how to be my own health advocate. But at the time, in the rush of panic, fear, and confusion, I wasn’t able. I blindly trusted. That trust cost me years of discomfort, sleeplessness, and rabid anxiety. Despite being at a reputable hospital, I was never provided with the option that would have allowed my body to heal the easiest. There was never a mention of going flat. And why? Because I was too young? It had to be entangled in societal expectations for the female body. Despite cancer claiming my actual breasts, I needed to still look like I had them? Because I was young enough to still be sexually attractive? My medical care, my treatment options were edited due to my gender. That’s maddening.
Not able to realize the medical misogyny at play, I went ahead with the expansion process at the time of my mastectomy. Having expanders shoved up under my chest muscle was not a great way to heal. Each time they added more saline, I needed valium to function. The intentional distortion of my chest muscle was utterly barbaric. It was a little taste of medical grade torture. I have no doubt if one man underwent the expansion process, it would be abolished in a second.
“One thing I learned since was how to be my own health advocate. But at the time, in the rush of panic, fear, and confusion, I wasn’t able. I blindly trusted. That trust cost me years of discomfort, sleeplessness, and rabid anxiety. Despite being at a reputable hospital, I was never provided with the option that would have allowed my body to heal the easiest. There was never a mention of going flat.”
But I persisted and had my “permanent” implants put in about five months later. It was supposed to be my last surgery, but that’s not how it went. I ran back to my normal life as quickly as I could and luckily, met Erin. Erin was in her thirties and recently diagnosed. We became friends instantly. Her doctor also said she was too young not to reconstruct. It was freeing to talk to someone who had actually experienced a similar situation. It was a few years after Erin’s mastectomy/implant surgery we started to compare notes on some symptoms we were having. “Are your boobs freezing?” Mine too! “Do you feel like there is a tight band wrapped around your chest, like you can’t get in a full breath?” YES! I had an area of sharp pain on the side of my left breast; Erin was constantly fatigued and diagnosed with capsular contracture. We both had anxiety about the possibility of a rupture. We started to research Breast Implant Illness and look for an explant specialist in our area. We independently found the same doctor.
Dr B. gave me the most thorough breast exam of any doctor I had encountered before. He quickly identified my area of pain as the location where the surgical mesh was affixed. Something I didn’t even realize was in my body. He confirmed all of my symptoms were likely due to the implants. We decided to remove the implants and leave the skin to later utilize fat transfer to re-create breasts.
I decided to get a second opinion, as I like to think I learn from my mistakes. I went to a different, esteemed university hospital in Philadelphia and met with a plastic surgeon. His nurse practitioner came in first, listened to my concerns and request for removal. She suggested smaller implants. I felt confused because I didn’t understand how smaller implants would alleviate any of my symptoms, but waited to see the doctor. Without examining my breasts, he came to the same conclusion. I should try smaller implants. He dismissed my concerns saying women who have mastectomies complain of these symptoms, even if they don’t reconstruct. He told me that with the implants in place for five years they distorted my chest and I would be concave should they be removed. He did not think fat transfer was a viable option. He told me that if I removed the implants he personally felt the outcome would be “aesthetically unpleasing.” I dressed as he spoke, not able to get out of there fast enough. I was stunned. I knew plastic surgeons focused on aesthetics, but I thought his role as a medical doctor would take precedent. I thought that he would prioritize my health over my appearance. I was wrong.
It’s taken me the last year or so to really grasp the gender bias in medicine. I had no idea that medical advice was so rooted in society’s sexist ideology. It shocked me. You might be fighting for your life, Ma’am, but please continue to look “normal” for the rest of us. Seriously?
After my explant surgery, my symptoms disappeared. No more constricting tightness around my chest, no more freezing skin alienated from the rest of my body by an implant. Months later, I was scheduled for the fat transfer. By that time, I was over it. I didn’t want the risks involved just to build “breast mounds.” Taking off the excess skin and going flat was the closest thing to a mind-body connection I had in years. It felt honest.
That said, honesty isn’t easy or simple. Being raised in this culture, I absorbed so many sexist notions about my body. It’s taken me months to be intimate with my husband without wearing a concealing padded bra. As if it’s not challenging enough on its own, going flat coincided with an unfortunate pair of events. The therapeutic tamoxifen I was taking since my mastectomy decided to upend my body after five years of use. Months with raging and depressive PMS, along with crippling indecision and forgetfulness spiked right around the time of the COVID quarantine. My children, now fifteen and thirteen were full of their own hormonal imbalances, so it was a recipe for trouble. Adding in our joint confinement and it made for some spectacular battles. But we continue to talk and understanding brings laughter.
“It’s taken me the last year or so to really grasp the gender bias in medicine. I had no idea that medical advice was so rooted in society’s sexist ideology. It shocked me. You might be fighting for your life, Ma’am, but please continue to look “normal” for the rest of us. Seriously?”
This past New Year’s, I sent my original surgeon, the one who insisted I reconstruct, a really nice letter. It didn’t blame or shame; instead I tried to educate him on the patient’s point of view and told him about my subsequent surgeries. I asked to continue the conversation. I called his office repeatedly. His assistant confirmed he received my letter. I continued to call. She confirmed he received my messages. No response.
Why would he respond? He is the doctor. He is the man. Who am I to question his process? He’s right, too. He is the one with the power. That’s what needs to change. Every woman that is diagnosed needs to be educated on her options, all of them. She needs to be provided with the risks and benefits (short term, long term, physical, and emotional) of ALL possible treatment plans. She needs to be treated like an individual. This needs to be the universal standard of care with every doctor, in every hospital. Giving comprehensive information to the patient transfers that power. It provides her with choice. It affords her respect. It defends her dignity. It’s time to do better.
“Every woman that is diagnosed needs to be educated on her options, all of them. She needs to be provided with the risks and benefits (short term, long term, physical, and emotional) of ALL possible treatment plans. She needs to be treated like an individual. This needs to be the universal standard of care with every doctor, in every hospital. Giving comprehensive information to the patient transfers that power. It provides her with choice. It affords her respect. It defends her dignity. It’s time to do better.”
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