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Life After Breast Reconstruction

02 Aug, 2016

Do You Know What Breast Reconstruction Looks Like?

This post was originally written for the Young Survival Coalition blog. It was published by YSC June 24, 2016.

Does anyone want to talk about foobs?

Sure, everyone wants to talk a lot about boobs. When am I going to get them? How big are they going to be? Some want bigger, some smaller, some have Instagram accounts full of selfies in body-con dresses with puckered lips and padded bras because hers are just right.

They are retweeted, shared and liked every October when college students go all Girls Gone Viral using their perky, healthy breasts as a catalyst for disease awareness.

But, Foobs are not boobs.

When you get breast cancer, boobs are (in general) lopped off and put out for pick up on hazmat day.

That is, of course, after lengthy discussions about exactly what to do with them. Should we keep one, get rid of one? Should we just get in there and cut the vagrant out, hoping what ails it does not spread? Do we rebuild? How do we rebuild? They are pressed flat between plastic, squeezed, needled, examined, pinched, lifted, drawn upon. They are touched by more strangers than heirloom tomatoes at a farmer’s market.

What is the right decision? The one that's right for YOU.

And then, radio silence.

Once we make that decision they are never to be spoken of again.

And I want to talk about foobs. I have wanted to talk about foobs since I arrived home with tubes and bulbous devices sticking out of my sides. I have wanted to discuss their squareness, their hardness, their alien presence underneath my Marshall clearance robe; the only thing my mom could find on such short notice.

Because, well, I didn’t know anything about foobs.

Because no one talks about it.

I suppose I shouldn’t say no one. Bring up the word reconstruction in a cancer klatch and everyone will begin to clamor about their experience or opinion on the subject. Bring up the word mastectomy in conversation on say the D train and watch how men and women who’ve never had to make such a decision (or known someone who had) instantly stand further away from you.

We need to be able to have these conversations. Not just between survivor sisters, BFFs and spouses, but as a collective societal whole. Because the pink ribbon, get on with my life breast cancer does not happen to everyone. Because even though global media has shared beautiful black and white portraits of women flat and scarred, social media bans images of reconstructed breasts. Because when I walk into a boutique looking for a summer sundress, no one can tell what lies beneath is nothing but silicone and skin, nothing but a sensationless, rock hard permanent prosthetic that likely won’t agree with half of the fashion options available to me.

Reconstructed breasts are not cosmetically-enhanced breasts.

I want women to know they are not alone. I want these women to know someone else understands that anguish, that feeling of loss and the nagging suspicion they are somehow a broken doll.

Of course, I get it, this is not a new subject, per se. But it is a clandestine subject all the same. We can talk about breasts (and see them) ad nauseum. We can celebrate scars and feel empowered by women who choose to remain flat, but reconstructed breasts seem to give people the heebee jeebees. 

You see, I recently pitched my intimates line, AnaOno, to a room full of savvy, seasoned businessmen and business women. In previous such meetings, I didn’t always seem to get across the point that our bras served a very specific purpose, and that the wireless bralette dujour in the major market wasn’t always an answer for us reconstructed ladies. They were inspired and moved by my story, but they weren’t ready to pull the financial trigger. The need, pardon the pun, wasn’t sexy enough for them.

1 in 3 of us can't find a bra.

So, I made the decision to switch it up. A mastectomy is an amputation, and I was going to present what that looked like, and what breast reconstruction looked like. I figured people were still considering it a nice perky boob job by a cosmetic surgeon, rather than a radical amputation with a permanent prosthetic done by a plastic surgeon.

I can honestly say even I at first thought it was a little jarring; seeing the images purposefully juxtaposed within my presentation. And I lived through the ordeal! The stitches from a TRAM FLAP surgery and expanders with drains do resemble carnage. Because they are carnage to a certain extent. Body parts have been removed. Skin and tissue has been moved around. There is blood and scarring. I shudder because I remember the pain, the insecurity, the emotions and the fear surrounding my own surgery and brutal chemotherapy.

But to see this room full of men and women recoil and grimace at those same images, and constructively suggest I remove them from further presentations made me angry. Many of us have looked like those pictures, and it is not only what saved our lives, but it was also a decision we made as young survivors because it was what we wanted. No one questions an amputee if they choose to have a prosthetic, an implant or nothing at all. No one tells Aimee Mullins not to change her legs on a TED stage. Why is someone telling me to put away the foobs?

Why is Facebook telling women to put away the foobs?

Why is there backlash against women who choose to get foobs?

Why are we not talking about the exhausting process, physically and emotionally, a woman goes through to get her foobs? (And while we’re at it, that sometimes the foobs fail, the surgeries linger over years, the implant doesn’t take and the woman on the other end of the ordeal is scarred not only on her body, but along the lines of her fractured self-esteem?)

I mean, just WHY?

So I encourage you to talk foobs. To tell your story in the comments. To share this story on Twitter or Facebook and explain to others what your life is like with foobs and WHY you decided to get them.

In this process and life that is cancer, whether you are newly diagnosed, in treatment, in maintenance, stable, NED or still living with it as a chronic, terminal illness, we all start at the same place. Terrified and wearing an open-back itchy hospital gown. We continuously think about what, if anything, the future holds. And we go into warrior mode, and one day wind up searching for someone who can tell us, “Me, too!”

To all of you card-carrying members of the Friends of the Foobies club, I am saying to you “Me, too.” We started the conversation first on the Young Survival Coalition blog and Facebook page. Let's continue it!

So maybe one day we’ll be sitting in a movie theater or flipping through a magazine and we’ll see one of our celeb recon sisters brave enough to go topless or have a sex scene with her own body. And the audience won’t recoil in horror because we made the difference by starting that conversation and being the pioneers.

Breasts don't make you beautiful. YOU make you beautiful.

We want to hear from you! What do you want to talk about when it comes to life after breast cancer? What's missing from the conversation? Email your thoughts to am@anaono.com so we can address what you (and others) have to say in a future blog post. 

NOTE: All photographs in the post are every day women of all ages who've had breast reconstruction (FLAP or implant).

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36 comments

Caroline O'Connor

August 07, 2016

An amputation. Yes, though I never thought of it that way before. Made mine a prophylactic double with one Diep and one TRAM. Quite a few complications, one near fatal pulmonary embolism. I jokingly call them Franken-boobs, scarred, stitched together and symbolic of my fear and pain. Also a badge of honour that I value life more than my vanity and I love my family more than some serious pain. I will never feel the same. Never be the same. But I am still here and I am still me.

Stori Nagel

August 08, 2016

Each one of us is reconstructed different. I think we should all embrace the “new normal”. Remember to research your doctors and be assertive to get the best possible results.

Betsy Jennings

August 08, 2016

I am a woman with a very high risk of breast cancer who chose to undergo a prophylactic mastectomy last year. Because of that I am considered a previvor, if you will.
Women who do what I have done also must deal with those in the breast cancer community who feel that we are not “survivors” of anything, because we did not actually have breast cancer. I have read many articles of this ilk. I am sure that for those of you who developed cancer that if beforehand, you knew you were at a statistically higher risk for it (for me it was close to 40% lifetime risk, and I was gene negative) you may have chosen the same route that I did.
Though I did not endure cancer, I lived 22 years of hypervigilance. MRI’s, mammo’s, ultrasounds, and multiple biopsies, my first showing abnormal cells at age 27. Visits to the surgeon, and return visits to take a feel at suspicious lumps over the years. Some were biopsied, some were watched. After 22 years I got to chose to end it, and end up with a less than 1% lifetime risk. No more breast center. No more MRI’s. No more mammograms. No more scares.

I have breasts that were gouged out & stretched beyond capacity with expanders. I had drains and bruises and the pain of mastectomy that breast cancer ladies have endured. Now I have nipples that feel nothing, and patches of skin on my sides and mid-back that feel nothing, but feel weird tingly pain with certain sensations. I wonder when looking at my chest if I will really know when plastic surgery to “revise” them won’t be an option I actually consider. Will I ever say, and really know in my heart that these are my foobs, and move on with my life?

The truth is, I did not have a cancer diagnosis, so I feel invalidated at times for the journey I endured to finally undergo this life changing surgery. I got to choose NOT be a cancer patient. My mother endured chemotherapy after mastectomy 25 years ago. My father endured radiation for prostate cancer. I saw the devastation that is cancer for both of them in such different ways.

When I found a lump last year, and they called me back to the breast center after my MRI for more views, it scared me to the core. My father was dying, and all of a sudden I realized that I did not want to live like this that any more, this life of fear. I have a young son, a family that needs me. It scared me in some visceral way I could not explain. My breast surgeon, herself a two time breast cancer survivor, mentioned the prospect of a prophylactic mastectomy, given my high risk for the diagnosis. When she told me my risk would drop to less than 1% with the surgery, I was a blubbering, sobbing mess at the relief I realized it would bring me.

I have the issues other mastectomy patients have in regards to the surgery and all that is involved with it, without the cancer trauma attached. I just had the cancer fear that gnawed at me every 6 months. (or sooner, if I found something)

At times I feel like I reaped the benefit of the prophylactic procedure without feeling like I have a true community in all of it. (only parts, which sometimes are invalidated) I hope this does not sound trite. Yes, I do not have a “life without breast cancer” but I have a life with breasts that are the same afterwards. And this can be strange, and humbling.

Gayla

August 10, 2016

Wanted to let you all know that on the series “Ray Donovan” Season 4 , Episode 6, they show a topless cancer survivor, implant on one side and real breast on the other. Topless in a sex scene! Good for them! Just like me…

Michaela Codding

August 28, 2016

Had a double mastectomy a year and 6 months ago after being diagnosed with stage 3 breast cancer. No one who hasn’t gone through this understands what goons look and feel like. Pain and cramping lasted for over a year and my scars are finally just now healed. I do equal it to an amputation with loss of feeling, loss of range of motion after radiation. I still hate looking at myself in the mirror.

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