I am permanently disfigured.
That’s a pretty horrible sentence, and I think a lot of people might try to talk me out of it. But it’s true. My chest is a topography of pain. There are two valleys where my breasts once were, skin stretched across and stuck to muscle, scar tissue forming strange ridges and tucks. Above the collar of my scoop-neck tank top, my skin is still soft. But if I lean forward, you might catch a glimpse of the cliff where my unspoiled self ends and the hollow cavities that cancer left behind begin.
A few months ago, I made a dramatic, life-changing decision: I decided to give up on my post-cancer breast reconstruction and have my implants removed.
And though this particular surgical outcome is new, the truth is that I've been disfigured since my original double mastectomy two years ago. But through a mixture of denial and hope, I wasn't ready to accept it.
I think part of me hoped that with the right kind of reconstruction, I could erase what happened to me. I could get a beautiful tattoo, have a beautiful body, and somehow turn cancer into something that made me more attractive, rather than something that left me broken and scarred.
The reality is that cancer cannot be erased. We can remove it from our bodies, but we will never feel the way we felt before. We’ve lost our innocence, our naiveté that bad things happen to other people.
I had cancer, and the reality of the matter is that cancer sucks. It is a bad thing that happened. It is okay to move forward with the knowledge that it cannot be fixed and that I cannot go back to how it was before. Sometimes, bad things happen.
My reasons for removing my implants are layered and many. But at the very core, I made a decision to stop being at cancer’s mercy. Every day, I felt like I was fighting something foreign in my body. Any time I moved my chest muscles, I felt the implants contract. Getting in a pool or a bath made me feel like my chest was floating away from the rest of me. My body didn’t belong to me anymore, and that was cancer’s fault.
The morning of the implant removal surgery, my mother — a two-time breast cancer survivor herself — held my hand in pre-op as I cried. This was my fifth surgery post-cancer, and was the only one that I elected to have. There’s something to be said about making a decision from a place of power, rather than a place of reactivity. But I cried because I knew that however I looked when I woke up, it would be sad. What happened to me is sad.
My decisions after my initial breast cancer diagnosis two years ago were reactive. They were life-saving decisions. Which doctors would I choose? Would I have both breasts removed, or just one? What type of reconstruction would I have? All of these decisions were made in a state of shock, where I wasn’t entirely inside my own body or head.
For me, having only one breast removed wasn’t an option. I never wanted to experience cancer again, and would do anything necessary to decrease that risk.
The reconstruction was the next decision to be made, and I was presented with three choices that I assumed were all the choices. I got all the information about all of these options, but wasn’t a candidate for the first two. So really, my decision was made for me.
Once that decision was made — reconstruction with implants — I learned what the process would be like. “The goal,” my surgeon explained, “is to make you feel whole again and try to give you back some of what cancer has taken from you. We want you to look normal under your clothes. Unfortunately we have to remove your nipples, so you won’t look ‘normal’ with your clothes off. Also, you will no longer have any sensation in your breasts, because we have to sever the nerves during surgery. More likely than not, you will never feel anything on this part of your body ever again.”
At that point, I think I emotionally checked out. I didn’t care anymore, I just wanted the cancer out of my body. I trusted my doctors to make the recommendations that are made in these circumstances, and it seemed that they were doing just that. I would wake up from my surgery with no cancer and something called “tissue expanders” under my pectoral muscles. A year later, the tissue expanders would be replaced with permanent implants. “Though, by ‘permanent,’” my doctor explained, “we don’t actually mean permanent, because they expire after about ten years and need to be replaced. We’ll put the implants under your muscles, because if the cancer comes back, it will come back on your chest wall. By putting the implants under your muscles, any recurrence will be seen right away. If we put the implants on top of your muscles, the recurrence could happen underneath the implant and we wouldn’t know until it’s too late.”
If your eyes crossed reading that (or maybe you skipped it entirely), imagine how much of it I absorbed. Basically none of it. All I knew was that "too late" sounded like a terrible option. I agreed to the surgery, not able to focus on anything other than not dying. It would require one night in the hospital - how bad could it be?
The truth is, the process of reconstruction was by far the worst part of my cancer treatment. I will spare you the details, but suffice it to say that the reconstruction portion of my mastectomy was incredibly painful, and I lived with hard plastic expanders in my chest for over a year. They felt like a too-tight, circular underwire bra, constantly digging into my ribs. It was awful.
The implants themselves, which I got a year later, were much softer, but they served as a constant reminder of cancer that made me physically and emotionally uncomfortable.
Fast-forward to early 2019. After four cancer-related surgeries, I knew I needed one or two more if I wanted the implants to look better. As they were, they were uneven, lumpy, and had strange folds in weird places. The following surgeries would attempt to give my chest a more natural shape (they didn’t look “normal,” even under my clothes) and prosthetic nipples. And then, of course, in about 10 years I’d need to have the implants replaced, because "they aren’t meant to last a lifetime."
Up until this point, I wasn't really considering having the implants removed. After all, I'd been through a whole hell of a lot to get them, and while I didn't love them, they were fine. Until, that is, I saw the plastic surgeon to discuss my next steps.
Somewhat offhandedly, I asked her when I’d know that I needed the implants replaced, as I didn't see an expiration date on any of my documents. She began to describe how my “breast” might begin to change shape over the course of a few days. Alarmed, I said, “you mean, I’m waiting for it to rupture? I thought they expired?”
Apparently the word “expiration” is a bit of a misnomer. The implants don’t expire like a carton of milk expires. They expire as in die, pass away, decease, perish, depart this life, be no more. I looked down at my chest and for the first time since I had cancer removed, I saw two ticking time bombs.
“Is that safe?!” I asked the doctor. In the 1990s, she explained, silicone implants were taken off the market over concerns for women’s safety. Long-term studies were done, and they were put back on the market after being determined safe. Now, before I get to the next bit here (which will really knock your socks off), consider this: silicone implants became popular in the 1980s, and there was a surge of women who filed complaints about side effects (from unruptured implants, mind you). In 1992 they were taken off the market, and women who wanted augmentations had to have saline implants — saltwater in a silicone outfit, basically. Then in 2006—just 14 years later—the FDA approved the use of silicone implants after finding no long-term risks to women’s health.
Oh, except for the rare risk of developing another type of cancer.Yes, that’s right: there’s a specific kind of cancer associated with breast implants. But if you’re the manufacturer of implants (or the FDA, or a plastic surgeon, apparently), you decide sweep that aside - it’s rare and won’t happen to you. Never mind you already HAD cancer at an age that was considered rare. Let’s risk it again in favor of “looking normal under clothes,” shall we?
After some research into the FDA’s approval of silicone implants, I came across this juicy tidbit: “Ruptures of silicone gel breast implants are often "silent," meaning patients and doctors may not notice them. They can only be detected by MRI. For this reason, the FDA recommends that women with silicone gel implants get an MRI three years after implantation and once every two years after that. MRIs may not be covered by your insurance. Over the course of a woman's life, these MRIs may cost more than the original implant surgery.”
Reading that, my jaw hit the floor. This was never suggested to me — not mentioned, not even hinted at — and now I’ve gone through one of the most painful experiences of my life and two surgeries. What now?
And then, two days later, my mind was blown when news broke that Mentor, the manufacturer of my implants, along with another manufacturer were being investigated by the FDA for failing to do the long-term studieson women’s health that they were required to.
For the first time in my breast cancer journey, I was straight-up angry. I believe my doctors to be well-intentioned, and I believe they made the recommendations they made based on the information available to them and the misguided notion that in order to feel whole again, one needs to do everything possible to make it look like nothing ever happened.
The reality, however sad it may be, is that implants do not make women feel whole again. Feeling “whole again” is something WE do, through lots of hard emotional work and self-acceptance. We got dealt a crap card. We had cancer, and we had our breasts removed. Trying to make it look like nothing happened, at least for me, is like trying to forget the entire experience — which never works. No matter what you do, PTSD comes up in nasty ways unless you face it. Some of us get to a place of acceptance quickly. Some of us never get there at all. But the idea that we “need” something hazardous to our health and potentially carcinogenic to get there is an insult. It also implies that the reconstruction looks good, which often, it does not.
This experience has made me realize that breast reconstruction is a feminist issue. During the most traumatizing weeks of my life, I was railroaded into reconstruction by well-intentioned doctors that assume I am incapable of feeling "whole" without breasts. My mother, in her 70s, had to repeatedly voice that she did not want reconstruction after her mastectomies to doctors who tried to convince her otherwise. And this is happening all over the country. This culture we're living in makes us feel that despite surviving cancer, it is our desire and responsibility to look good — by any means necessary. Honestly, it makes me feel sick.
Despite the fact that I am disfigured by cancer, you would never know it by looking at me clothed. Ironically, I look more “normal under clothes,” since having the implants removed than I did with them, thanks to the modern prosthetics I wear from Handful (highly recommend this company for any woman — with breasts or without!).
Emotionally, it’s been a roller coaster couple of months. I am working on accepting what’s happened to me, and getting to a place where I can feel beautiful in spite of it. I am not there yet. Cancer has changed everything about my body — my breasts, my weight, my hair, my eyebrows – and none of it is considered attractive by western standards of femininity.
However I have never regretted, even for a moment, my decision to remove the implants, especially after a world-wide recall of a specific type of implant. This scarred, disfigured body feels like mine again, and without the implants, it’s starting to feel like a safe place to live again.
I’m just sorry I went through so much pain to get here.
