On non-reconstruction

swimsuit cropExactly seven years ago today, I had a unilateral mastectomy (they threw the lymph node dissection in as a bonus). I wasn’t supposed to have cancer. My cancer wasn’t supposed to be in a lymph node. And I certainly wasn’t supposed to have a mastectomy.

Things don’t always happen the way they’re supposed to.

Roughly a week before my scheduled lumpectomy, some suspicious MRI results meant my surgery had to be canceled to accommodate follow-up tests. (Can I mention here that you haven’t lived until you’ve had an MRI-guided breast biopsy? I was immobilized on a table, my breasts dangling through a hatch so that technicians with drills could access them from below. It was like being the car at Jiffy Lube.)  When it was all over, the surgical plan had changed to mastectomy.

I got the word about the new biopsy results and met with my surgeon on Wednesday, March 5.  Surgery was scheduled for Thursday, March 13. That didn’t leave much time to think about options. I was pretty sure I didn’t want reconstruction, and a hastily-scheduled consultation with a plastic surgeon two days before my surgery didn’t change that.  If anything, it solidified my negative feelings – a mixture of queasiness, fear, and horror.

Of course, I was pretty shell-shocked at the time. It’s possible that if circumstances had been different in any of a hundred ways – if I was younger, say, or older; if my breasts were bigger, or smaller; if I’d planned on mastectomy from the get-go and had more time to get used to the idea; if I wasn’t a competitive runner obsessed with training and 10k times; or if I was just less of a chicken about surgery – I would have gone a different direction. One never knows.

Why not reconstruction?

First, the required disclaimer: nothing in this account should be read as attacking other women’s choices, disparaging their results (some of which I’ve seen, and know can be amazing), or offering medical advice. It’s about my personal reactions to my individual situation at a specific point in my life.

Got it? Okay . . .

There are two basic approaches to post-mastectomy reconstruction. One involves implants, as in breast augmentation surgery – except that with no breast to augment, the implant is placed behind the muscle on your chest, which must be gradually stretched out over weeks or months. This is done through weekly fills with increasing amounts of saline. (I was told that for me, with my smallish breasts, the expansion process would take just a few weeks.) The result is round and firm and relatively immobile – and it will stay that way, even as your other breast sways and sags. (This week’s vocabulary word: “ptosis.”) As a consequence, surgery on the other breast is often required for symmetry’s sake. Oh, and because implants have a lifespan of roughly ten years, a woman in early middle age would be facing multiple future surgeries to swap them out.

The other approach to reconstruction involves moving bits of your own body around. Surgeons can craft you a nice, new, jiggly, squishy breast out of tissue from your abdomen, your upper back, even your ass. There are variations within these variations – some take muscle, some spare your muscle by using microsurgery to connect the blood vessels in skin and fatty tissue – but all are long, involved surgeries. Not infrequently, a second surgery is required to tweak the results of the first. Recovery time is significant.

Both these approaches create what surgeons call a “breast mound,” breast-shaped but featureless. Nipples are optional.* They can be added later, through a process that has been described to me by several different doctors as “kind of like origami,” and tattooed pink or brown or the color of your choice. While they’re at it, they can also tattoo you an areola.

To all of which, my reaction was: hell no. It wasn’t just about the surgery and all that it entailed, though that was certainly part of it. (I had made it to the age of 46 without ever experiencing surgery.) It was also – and really, this was the biggest part – emotional. Imagine a six-year-old offered a substitute for a beloved stuffed animal; now project that child’s desperate, disconsolate reaction onto a grown woman threatened with the loss of a body part. Those are the not-entirely-rational (but entirely understandable) emotions I was tapping into. I wanted my breast, goddammit, not an insensate mound with an origami nipple and tattooed areola, as though that’s the same thing when it’s not, it’s not at all. You might just as well cut the damn thing off and be done with it.

And so that’s what I had the surgeon do.

What a mastectomy is

I’m going to admit something embarrassing. Before I was faced with the possibility of a mastectomy, I didn’t really know what a mastectomy was. I knew it was the surgical removal of a breast, obviously, but how did they do it?

By which I mean, what does your chest look like afterwards?

I imagined myself with a man’s chest, a cute but purposeless little nipple on my left side where they’d scooped out my breast tissue and sewn me back up.  That would be pretty weird, I thought. But not as weird as having . . . nothing.

Thanks to the Internet, I was able to look at pictures. The first mastectomy photo I saw was the iconic “tree” poster of the artist Deena Metzger, beautiful, joyful and one-breasted, arms outstretched against the sky. “Is that what the scar looks like?” I wondered. It was far more prominent than I would have thought, and despite the fact that I’d braced myself before looking, I was a little horrified. (Later I understood that she’d tattooed a blooming tree branch over the incision. It’s a measure of my emotional state that I didn’t see that at the time.) I also saw Matuschka’s stark 1993 cover photo for the New York Times Sunday magazine. “You can’t look away anymore,” the headline read, and the editors were right – I couldn’t.

I wasn’t solely dependent on the Internet. During the week between my revised surgery plans and the actual surgery, as I shared the news and it spread, two individual women showed me their own scars. One was the nurse-coordinator assigned to my case (until then, I hadn’t realized she was herself a breast cancer survivor). The other was a co-worker. She approached me in the hallway and we ducked into the women’s restroom in the basement, where she lifted her shirt and undid her bra.

So I knew going into my surgery that an unreconstructed post-mastectomy chest is a blank. Depending on your body type and your surgeon’s skill, it may be flat, or there may be bulges and flaps of skin. The scar curves from armpit to sternum, and once it heals, is unobtrusive.

A few days later, I closed the bathroom door, stood in front of the mirror, and slowly removed the gauze dressing. I wanted to be alone for that first look. Someone, somewhere, had advised that it went a little easier if you looked down at your chest first before getting the full frontal view in the mirror, so that’s what I did. The incision was sutured and covered with steristrips, but I could see that it was nice and flat. Even when viewed head-on, it wasn’t shocking or horrifying, just . . . odd. My right breast, still bruised from its MRI biopsy ordeal, looked lonely without its partner.

I called Eric in for his first look, and he helped me remove the last, awkward bit of gauze around the surgical drain tube.  We were both quiet.  It was nice not to have the thick dressing between us when we hugged.

There’s always a kind of vulnerability that comes with being naked, and without my left breast, I was nakeder than naked. That’s how I described the feeling at the time, and seven years later, I still feel exposed and vulnerable when I take off my shirt. The bone, muscle and skin on my flat chest seem awfully thin and insubstantial. I can even see my beating heart: it looks like nothing so much as a small bird trapped inside my ribcage, flapping its wings rhythmically in protest.

A lopsided life

At the risk of stating the obvious, breasts are kind of a big deal in our culture. They advertise products, hang on museum walls, star in movies, draw web traffic, and motivate breast cancer awareness marchers (“save the ta-tas!”).

It’s easy to decry the sexualization of breast cancer and the use of women’s breasts for marketing purposes. It’s a little harder to confront the role our breasts play in our own lives, the ways they shape our perceptions of ourselves and our bodies. Sometimes they thrill us, sometimes they embarrass us. Long after our childbearing days are over, and regardless of whether or not we breastfed, they evoke nurturing. And – might as well admit it – they’re bouncy and fun. Did I always notice other women’s breasts? I honestly don’t know – but I know I do now.

Thanks to the spending patterns of my 22-year-old daughter, our household is permanently on the Victoria’s Secret mailing list. Browsing their catalog is a reminder that bodies like mine are, by and large, invisible. That is, in part, by choice. When I dress up, I usually wear a silicone breast form inside a pocketed mastectomy bra. It makes me look reasonably symmetrical. (“No one would ever know,” my first prosthesis fitter told me, in a hushed voice. And I agreed, and thanked her.)

Mastectomy bras aren’t frilly and flimsy and fun (and you can’t buy them at Victoria’s Secret). They tend to couple sturdy construction with matronly styling. Shopping for a mastectomy bra seems to me more like shopping for durable medical equipment than lingerie, and so I do it as little as possible. On occasion, I simply slip my form inside the cup of a regular bra (no underwire – that would dig uncomfortably into the area under my arm where the surgeon extracted my lymph nodes). I have one that I particularly like, a sheer, stretchy, girlish number from my pre-cancer days. The downside is nipple show-through – having none on my left side heightens its conspicuousness on the right, which is awkward in thin, clingy t-shirts. That, and the fact that if I lean over too far, the unsecured form may pop out and go flying. (This has in fact happened, but fortunately, never in public.)

In either case, if you look down my shirt, you will see a dangling breast on one side and a bony chest wall on the other. This bothers me a little, but not a lot. In certain situations, I relish it. (“That’ll teach you to look down women’s shirts, you lech!”)

More and more, though, I simply go lopsided.

The first time I met up with my running group post-mastectomy, I panicked at the last minute and stuffed a wadded-up bandana inside my sports bra. That was the only time I did something like that. It took a little while to feel truly confident – I bolstered my nerve by asking myself, “who looks at a sweaty woman runner’s chest, anyhow?” (please do not answer that question) – but I got there soon enough.

Running was one of my reasons to forego reconstruction – silly as it sounds now, I was desperate to get back to training as soon as possible – and it also helped reconcile me with my non-reconstructed chest. Like many (most?) women, I struggled for years with body image issues and feelings of unattractiveness (though I always liked my breasts). When I’m running has long been when I feel most at ease in my skin, most comfortable with and forgiving of (if occasionally frustrated by) my body. Surgery hasn’t changed that. Post-mastectomy, I’ve tried to draw on my runner’s body image – positive, whole – in other areas of my life where I feel less positive, less whole. If I can go lopsided in a running singlet, why not a swimsuit? How about a sundress? A tank top? A tee?

It’s true that nothing makes lopsided feel quite as natural as running – but then, nothing made non-lopsided feel quite as natural as running, either.

The point is, with time, things you thought you’d never do, you do. You get comfortable, you get brave, you get tired of pretending, or perhaps you simply care less (and what’s the difference, really, in the end?). The breast form spends more time in your drawer.

Turns out life in a lopsided, non-reconstructed body is pretty good.

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*There is such a thing as a nipple-sparing mastectomy, but it’s a newer procedure and not all surgeons do them . . . or at least they didn’t back in 2008. This would only be an option if the surgical margins around the nipple were clear.

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18 thoughts on “On non-reconstruction

  1. “queasiness, fear, and horror” – my thoughts (about reconstruction) exactly. I know that not everyone feels this way, but you captured my thoughts and feelings exactly. Thank you so much for posting.

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  2. Great essay! I am also uniboob, my left side is flat. I had my surgery 24 years ago at age 44. Just 3 weeks ago I decided to quit wearing my fake boob. It has been liberating.

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  3. We were going through this at the same time exactly, in March, 7 years ago! I also opted NOT to re-construct. The thought of it horrified me, and working in MedMal as I did, I was sensitized to the rare–but awful–bad results that can occur. Also, as the hostess with the mostest ptosis, there was no doubt I would need reconstruction on both sides to attain any kind of a balanced outcome. Why bother? I am actually physically more comfortable with my matronly bra and its silicon occupant ON, than off. When there is pressure on the mastectomized side I don’t feel all those weird sensations of numbness and pulling, but lately I’ve become a bit more casual at home going braless. One thing my surgeon did that makes me happy: he left a little mound of fat at the inner corner of the missing breast. This makes for some cleavage so I am not self-conscious wearing low cut tops.

    Here’s to all of us, regardless of our decisions. Symmetry is highly over-rated. Happy just to be here and to be well. Regards.

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    • “Hostess with the mostest ptosis” – that cracks me up. I think breast size must make a big difference in our individual reactions, but in unpredictable ways. Although I like(d) being symmetrical, I don’t really notice a difference in my posture or the distribution of weight when I go lopsided.

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  4. I’m 5 weeks out of a bilateral mastectomy (I’m 46), with no reconstruction. Wish I can say I have a runner’s physique, but it’s more like a “I’ve had 4 kids and have been too busy and lazy to exercise” body! Having a flat chest and a Buddha belly is not flattering and I am determined to run 10k before the end of the year! Thanks for being open about this!

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    • No doubt in my mind you will run 10K – if you want to, that is. Running helped me because it’s my thing, but I firmly believe that everyone has something. Or can have something. Thanks for reading and commenting.

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      • Thanks! That or ride 100 miles for ADA’s Tour de Cure for my daughter who has T1 diabetes! Best wishes to you! But I swear if someone tells me one more time I have no need for my Breasts anyways, I’m going to slap them (and I am not violent! LOL!)

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  5. Thank you so much for sharing. My mom has been diagnosed with IBC and will have to undergo a radical mastectomy with a slim chance of reconstruction. I feel so out of my depth and your insight is so appreciated.

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    • Lettherebetime, I’m very sorry about your mom’s diagnosis. You and she must both be reeling. I can only say that she’s fortunate to have you helping her – and if my post helped at all, I’m very glad. (A little secret: *everyone* feels out of their depth dealing with this stuff.)

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  6. Thank you ❤ I shared this on facebook.com/FlatANDFabulous – I actually did the expansion process before having it all removed to live the flat life. It was torture and I was never really able to move beyond my mx and recon as it was a daily reminder.

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  7. Thank you for sharing your story. I had a bi-lateral mastectomy 11/4/2014 and and still going thru the joys of chemotherapy. I did not get reconstruction. when I finish Chemo at the end of April, I will get fitted for my prosthesis. I am so very grateful to be alive (I had 3 cancerous tumors and my surgeon removed 35 lymph nodes) and now there is a light in my tunnel. For me, no reconstruction, is the right choice, and as Sandra said “Symmetry is highly over-rated”. thank you all for sharing a part of your journeys!!

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  8. Thank you for sharinG!! I lived the uniboob life for a year before I had a prophylactic sx on the other side. Your perspective is important. First diagnosed, I would’ve loved to read a post like this about a strong amazing woman with a unilateral mastectomy. PS love your description of the biopsy. ❤️❤️❤️

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  9. Thank you for sharinG!! I lived the uniboob life for a year before I had a prophylactic sx on the other side. Your perspective is important. First diagnosed, I would’ve loved to read a post like this about a strong amazing woman with a unilateral mastectomy. PS love your description of the biopsy. ❤️❤️❤️

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  10. Pingback: Lidt hjælp til inspiration; valget om ingen rekonstruktion (links) – Previvor behind the scenes

    • Glad you found these thoughts helpful – that was my hope in writing the piece. I’m sorry, though, that you’re in a situation where you need to be reading about mastectomy and reconstruction.

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