There’s so much support in the breast cancer world (truly, there are no adequate words to describe how amazing the support can be)…yet I found that there is also some overly enthusiastic “HOORAH!” surrounding reconstruction after a mastectomy. If I had a dollar every time someone told me I would have a “beautiful result”…good grief Charlie Brown.
I have, by all accounts, a “beautiful result”. I was treated by some of the top surgeons in the country, my cleavage (in most lights) is a sight to behold, and my perky, full breasts defy gravity.
However: they are not real. Up close, without the bra, they do not look real, they do not feel real, they do not act real. A beautiful result from a horrifying and monstrous surgery? You bet. But beautiful, real breasts? NOPE.
The second I got that phone call, the confirmation of breast cancer, the whole world seemed to tilt. Suddenly, I wasn’t driving straight down a road I knew, I sure as hell wasn’t on my way to swim lessons (that’s WAY too ordinary for The Day The World Tilted) but rather stuck in some…tunnel. Or a tube. Something narrow that didn’t quite fit – because you can’t really make sense of it, of where you are, you just know you are stuck in it, on your side, maybe upside down. And then it starts to roll and you can’t stop. You’re stuck in this thing, picking up speed as it rolls downhill.
A cancer diagnosis is a lot like that, at least at first. As you can imagine, your ability to comprehend past the “you have cancer” point is severely limited. And the world, The Tilted World is so much more terrifying and confusing – it makes the inevitable decision making process feel like a joke.
“You need a mastectomy” the doctor said. “Absolutely on your right side, but we’d really like to do the left side too. There’s no cancer there yet, but the calcification patterns–“
Ok I said. I’ll do both.
And mostly, that was it. That was the sum total of my decision-making process: Ok.
I just wanted to live. I wanted to live long enough to see my children grow. I wanted to live so badly that my hands felt like claws and I was prepared to claw my way back to health on my hands and knees, begging, if I must. That’s what a mother does. At that point, even if the doctors had told me they needed to do a double mastectomy and take my arms, too, just to be safe or maybe a leg, my answer, in that moment would not have changed: Ok.
Luckily, I had time to process the decision. I talked to my Mom (who had a single mastectomy 15+ years ago), I talked to breast surgeons, plastic surgeons, and other breast cancer survivors. I learned that I could get by with a single mastectomy, if I really wanted, but they would be watching my left side very, VERY closely. Nipple sparing surgery was a possibility on my left side only – the cancer was too close to the nipple on my right side. Reconstructing breasts from fat elsewhere on my body probably wouldn’t work. (“But!” the plastic surgeon said helpfully, “Maybe when we’re swapping out your implants in 15-20 years you’ll have enough fat then!”) Note to self: Plan on being old and fat.
But my initial gut reaction, the “OK”, stood. I opted for a double mastectomy, closely followed by reconstructive surgery – all to be completed before I started chemo. The only concession I made was to go forward with nipple sparing surgery on my left side. The advantage, I was told, was that I may get sensation back in my left breast someday. Now, almost two years later, I have a few thoughts on the subject. Here’s what I learned, a few surprises I wish I had a head’s up on, and a few fears that never came to pass.
Mastectomies, Reconstruction, and Things I Wish Someone Told Me
A mastectomy and reconstruction is not the same as getting a boob job. Because your breast tissue is removed, implants go behind the muscles in your chest wall. This will feel exactly like you think it will. Pushups feel strange, and sometimes while driving, if I turn the wheel sharply, I can feel the muscles pull across my breasts. It’s such a strange sensation (and wrong!! it’s all wrong!!) that it used to make me nauseous.
Your breasts post-mastectomy (what’s left of them anyway) will mostly likely be strange colors, flattened, wrinkled, bruised and bandaged little things. It’s not pretty, but neither is it as bad as I thought. In the days leading up to surgery, I worried unnecessarily about the “horrors” I would see. It’s fine. Don’t lose sleep over this one.
Get a prescription for a prothesis. You never know exactly what will happen after your mastectomy. Chemo might enter the picture, dates get moved around, how you recover can change your reconstruction schedule. In the meantime, you are missing some boobs and a key part of sanity is not staying indoors like a sick person. A prothesis (fake boobs, like chicken cutlets) can help. But you’ll need a prescription for it, so don’t leave the hospital without one. If you can, take your prescription to Nordstrom. They’ll not only fit you for a prothesis, but help you find a (shockingly beautiful) bra to wear it with. (And help you navigate the tricky insurance waters.)
psst! I’m wearing an Amoena prothesis bra in the pic below. A far cry from what you were stuck with 20 years ago, right Mum?
If you choose to get a single mastectomy, remember that they won’t age the same. #quotefrommymother #truth
They’ll always be your breasts. One of the happy surprises is that I never felt like my breasts were gone. Yeah sure, they no longer work, they look a lot different, and they’ve definitely been through some tough times….but they’re still ‘my girls’.
You will sleep on your stomach again someday. As a point of reference, it took me 5-6 months post-mastectomy.
Even after the reconstruction, there’s so much swelling and recovery that the shape of your breasts will change slightly over the next couple of years.
Reconstructed boobs are cold. My reconstructed breasts are not body-temperature, they are room temperature. Which means…they feel cold to the touch. Isn’t that shocking??? I’m constantly surprised by this fact. (Four-year-old Pax however, is still completely obsessed with my boobs, and dives down the front of my shirt every chance he gets. So clearly, they’re fooling someone.)
Plastic surgeons play it fast-and-loose with breast size. He and I agreed on – AND I QUOTE – “a full B cup”. Know what bra I’m wearing? 32D. (In his defense, it looks great.) But in general, I wish I had understood how little control I had over the final result. For example, during the reconstructive surgery, the plastic surgeon goes in with several possible implants. They pop ’em in, then prop your drugged self up (no, I am NOT kidding) so the room can check out the handiwork. “That one needs to come up a bit”, or “no, the other size/shape looked better” are the kind of discussions they have as a team. So rest assured that when you wake up from surgery, you get what you get what you get. (Hence, the importance of finding a really good plastic surgeon.)
Reconstructed boobs don’t look, feel or act like real boobs. There is some…puckering that happens under the skin when I make certain movements – almost like cellulite. #awesome Reconstructed boobs are harder, higher, jiggle less, and, once you know what to look for, relatively easy to spot. One the upside, I will never need to wear a bra again. I can jog, braless. It amazes me each and every time.
Your sex life will be missing something. Even after two years, I don’t have much feeling in my breasts. And if I understand correctly, they will never again be part of sexyfuntimes (there’s a small chance that my real nipple will eventually get some sensation back, but so far that hasn’t happened). My brain can remember back to a time when they were involved – to the point where I can *almost* feel something, but really, that’s just a good imagination rather than reality. This is the toughest lasting symptom, and the truth is….it makes me really sad.
Nerves grow back, slowly, in weird ways, and sometimes not at all. Even after two years, I can’t feel much in my lats. They are still numb from my mastectomy. (My mom also has this problem…and her mastectomy was almost 20 years ago.)
However, nerve endings are growing back. I now know when someone is touching my lats (although I often can’t tell how hard), and when Mike jokingly does “boob therapy” (where he grabs my chest with both hands) I have some sensations on the edges. Fun fact: If I look in the mirror while Mike does his boob therapy (standing behind me, wrapping his hands around to the front) it’s like my poor little nerves and my brain can’t agree (my brain remembers what it SHOULD feel like, my actual nerves do not) and the sensation is….AWFUL. It’s like an physical manifestation of “mind blown” and almost always results with me taking a swing at Mike’s face, and we end up collapsing in a heap from laughter. I am shuddering and giggling as I type this. It’s just SO BIZARRE.
Assuming you HAVE a choice, the choices you make regarding mastectomies, reconstruction, nipple sparing, etc. can be boiled down to this: aesthetics or sex. Sadly, you don’t get both.
With a double mastectomy, you are completely removing one of your sex organs, but can have, by all accounts, “a beautiful result”. With a single mastectomy, you are preserving one breast’s sexyfuntimes but you will struggle – in a worsening battle as you age – with trying to keep your reconstructed breast (or prothesis) and your real breast even. It’s virtually impossible. (Hint: My mom will sometimes use a prothesis to balance out her real side. Cleverness born of desperation, that’s cancer for you.)
Additionally, if aesthetics are your main objective, don’t go with nipple sparing surgery. Nipple sparing surgery (in my opinion) should only be done if you are hoping to someday get sensation back. If you just want beautiful, matching nipples, then let yours go. Even if you had pretty ones to begin with, nipple sparing surgery can change the shape, color, and um…direction they point. However, the skin oragami and nipple tattoos that can be done on bare skin is jaw-droppingly amazing.
To nip or not? Trying to decide how to finish off my nipples has proven a much a harder decision than single vs. double mastectomy. For example, do I have them recreate a physical nipple, and THEN tattoo it? This method is closest to the original, but I’d be left in a permanent ‘nip’ situation. (“Are you cold?” Nah, that’s just my fake nipple. SIGH.) OR….I could simply get a 3-D tattoo of a nipple. From the front it would look normal, but from the side, you could tell that it’s just…..a tattooed nipple. Safe to say that a career in stripping is off the table. So instead, here’s another boob shot. HA! #boobsforterri #insidejoke
These decisions are weighing heavily on my mind right now – I actually have a consultation with the plastic surgeon on THURSDAY. To nip, or not to nip? THAT is the question.
Also, Nordstrom had asked me to take a look at their Amoena line. Amoena makes a whole line of bras, camis, and swimwear that can easily be worn with a prothesis. My mom had a single mastectomy almost 20 years ago, but her own reconstruction is more recent – in the last 10 or so. So for 10+ years, my poor Mom put up with ugly, matronly bras, truly terrifying swimwear, and a fear that if she leaned too far forward, you’d be able to see right down her scarred chest. Breast cancer is ugly and frustrating. So I’m beyond thrilled that someone is finally (FINALLY!!) coming to the aide of those dealing with a prothesis. I mean seriously – these beauties are a far cry from what my mom had to deal with 20 years ago.
(The Amoena line has actually been around for 40 years…but in our tiny little town of Marquette, MI…we never knew. Here’s a real big ‘YAY INTERNET’ on that one.)
This has been such a crazy journey, you guys. Never in my life did I dream that I’d be writing so much about nipples. GAH!
xo,
S
A huge thank-you to Nordstrom for sponsoring this post, and to Amoena for doing what you do. As always, all product choices, thoughts, and opinions are my own. (Or as Pax would say, “MINE OWN”.) Thank you for supporting the retailers who help support The Mom Edit.
photography credits: Mike Draugelis
