double mastectomy

Going Flat: The Choice No One Talks About

Why does no one talk about going flat?

I watched the Angelina Jolie breast cancer coverage the same way I watch scary movies — with my eyes covered. As I peeked at the news through fanned fingers, I was pleasantly surprised at how everyone handled themselves. (I’ll save my thoughts on the portrayal of “celebrity madonna figure cuts off breasts for the children of the world” for another day.)

My critique is twofold: One is that the discussion glossed over the pain, complication rates, and loss of sensation across the entire chest (not just the nipples) that reconstructive surgery entails. Two is that there is a far less complicated way to move past a double mastectomy that no one ever talks about: going flat.

Of course, Jolie’s livelihood relies, in part, on her breasts. So I can’t imagine that was an option for her, but it is an option for other women who are considering double mastectomy.

The “save the rack” mentality shared by so many in the breast cancer community can make it difficult for women to see a way forward that doesn’t involve reconstruction. In the weeks following my breast cancer diagnosis in 2009, I saw five surgeons. Each one approached me with the assumption that I wanted a new breast at any cost. (More on that in Part 2.)

As a science writer who specializes in women’s health issues, I’ve written extensively about breast cancer. As a patient, I saw how easy it was to go down the road to reconstruction. But I can also tell you that road is paved with the good intentions of doctors and pockmarked with huge piles of shit, most likely left by all those ponies and unicorns prancing around inside the minds of plastic surgeons and women alike.

As I yearned for balanced coverage, I was excited to see last week’s article in The New York Times “No Easy Choices on Breast Reconstruction.” The paragraph below tiptoes as close to the truth as any I’ve seen in mainstream media:

Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result.

This paragraph echoes what I’ve been told by dozens of breast cancer surgeons and patients alike. I also experienced the imbalance firsthand. None of the plastic surgeons I consulted said anything about complications, pain, and the possibility of muscle weakness. No one asked if I had a history of back pain (I do) or fused vertebrae (I do) both of which may increase odds of complications, like chronic muscle pain and reduced mobility. The public hears a lot about successful reconstructions, like Jolie’s, but we rarely hear the stories of women who are disfigured and debilitated by reconstruction.

Recently, I was assigned a feature about breast reconstruction for the digital magazine VIV. In that piece, I strove to reflect something more akin to reality. The final magazine feature included most of the following facts and figures:

  • The majority of women—55 percent—don’t reconstruct at all; they choose to either to wear a prosthetic or go without.
  • Women who have immediate (versus delayed) reconstruction are 2.7 times more likely to have a major complication, like tissue death, and are less satisfied with the final result.
  • Among women who choose implants, 30 percent will have complications, such as a hardening of the tissue around the implant (called capsular contraction) in the first year. Within four years that number may exceed 50 percent.
  • The Food and Drug Administration advises women with silicone-filled implants to get an MRI every two years to check for leaks. Not all insurance companies pay for the follow-up scans, which can easily cost a thousand dollars or more.
  • Tissue transfers are extensive surgeries with long, arduous recoveries. They require up to 9 hours in the operating room and up to a week in the hospital, including a day or two in intensive care to monitor blood flow to the new breast.
  • Tissue transfer studies are rare, but in one well-designed trial, 36 percent of women who underwent the most common tissue transfer surgery (called a TRAM flap) had a major complication.
  • A study published in 2010 in the journal Annals of Plastic Surgery found that many women who had tissue transfers felt ill-prepared for the loss of muscle strength, numbness, and extent of scarring.

And, call it personal bias, but I found it reassuring that long-term studies show that 5 and 10 years out, women who had a mastectomy without reconstruction were thrilled with their decision.

I’m glad that Jolie is inspiring women to get tested. The public needs to see smart women empower themselves to get information and act on it. I just wish women had a greater variety of role models to choose from in this realm. Women who chose less-invasive options and are living happily without boobs.

Flat: Womanhood reshaped

(This post about going flat has been in the works for a couple of years now. As I dust off my blog, I thought I’d go ahead and send it up.)

Up until they were amputated, I didn’t give my breasts much thought. Like any other body part, they’d been mine for as long as I could remember and, frankly, I found them rather anticlimactic. I dressed them, undressed them, and washed them in the shower.

No big wup.

Occassionally I’d wonder what it would be like to have the kind of breasts I see in the movies. I’d watch a starlet’s double DDs burst out the top of her gown, like my iris bulbs heaving themselves unceremoniously out of their beds each spring, and I’d wonder “wowza, what would it be like to have a pair of those pups?”

But mostly, my feelings toward them vacillated from indifference to annoyance. They annoyed me because I hated wearing a bra, especially in the summer. I wanted the freedom to walk my dog to the park wearing nothing up top but a cool, wispy T-shirt. But, too embarrassed by the bounce-factor, I’d pull on a bra, sure to be damp and sticky within 5 minutes and squeeze my chest like an anemic boa constrictor.

Given my ho-hum attitude toward my breasts, I was (and still am) shocked at the depth of sadness I feel by their passing. The double mastectomy wiped my chest clean. If it weren’t for two, neat scars, you’d never know they’d existed at all. I wonder if I’ll forget what they looked like, like the fading memory of a past lover.

Dana Jennings, my favorite NYT blogger, wrote here about how his erectile dysfunction (a side effect of prostate cancer treatment) made him reconsider what makes a man. The one sentence that resonated most deeply for me is: “I’m just trying to understand, trying to articulate, what it feels like to be damaged goods in our oversexualized culture.”

Some days I feel like damaged goods. Those days are often sparked by a look in the mirror. As both a yogi and a yoga teacher, I spend an inordinate amount of time in mirror-lined yoga studios, dressed in tiny tank-tops, surrounded by other women in tiny tank tops…most of whom are under 30 and all of whom have breasts. Now, I’ve always had a pretty healthy body image, but, on a daily basis, this scenario can kick my sense of womanhood in the teeth.

Of course, as Jennings points out, being a man or a woman is about much more than the fleshy bits. But, in a culture obsessed by the fleshy bits, being without them makes me feel “less than” in some intrinsic way. The deep sense of loss I felt after my surgery and continue to feel shocked the pants off me. At least once a day, I am caught off-guard by a stabbing sense of sadness.

I still avoid looking in the mirror when I step out of the shower. And trying on clothes in women’s dressing rooms is like entering the 6th circle of Hell, between the flourescent lights and the fact that the article of clothing I am about to slip over my head may fit nicely or it may droop listlessly, extra material bunched like two flat tires pinned to the front of my chest. I have fleeting moments of wondering what reconstruction would be like. Wondering if I would be happier. Wondering if it would be fun to have bigger breasts than I had before. But then I slip on a cool, crisp T-shirt leash the dog and walk out the door reveling in my new found freedom.

So, you’re better now, right?

Folks who get breast cancer, myself included, get this question ALL the time after “active treatment” ends. In the face of this question I stammer and say…”well, it’s complicated.” But thank goodness I have brilliant friends. This is–by far–the best answer I’ve ever seen to a question that is too nuanced and depressing for me to answer on most days. In one fell swoop, my friend summed up what I’ve been wanting to say for the past 2 years. Bless you R (and dear Ro). May she and I enjoy long-standing membership in the 60 percent club.

Picturing Breast Cancer

The loss or disfigurement of one’s breasts to cancer is traumatic. One reason it’s so painful is how visibly the surgery can change the body’s landscape. Once treasured contours are clear-cut in the name of survival. Not wanting to be shocked after surgery, I sought out photos online and in books of women who’d lost their breasts to cancer. In hindsight, I won’t call that time misspent, but I do wish I’d come across David Jay’s SCAR Project earlier.

The Season of Breasts

Summer is the season of wear-as-little-as-you-can-get-away-with weather. And everywhere I look I see breasts. Breasts that are barely covered by bikinis. Breasts holding up colorful tube tops. Breasts peeking out from behind skimpy sun dresses. Breasts, breasts, breasts.

I didn’t pay that much attention to breasts before my surgery. But now that mine are no longer, I can’t see a pair without feeling a bit melancholic, and the negative space of my missing breasts feels amplified by the proliferation of boobage around me in a season of scantily clad bodies.

A few weeks ago, I endured my own little rite of passage when I wore a bathing suit for the first time since my double mastectomy. No bones about it–I am flat. No, let me be more clear–I am VERY flat. Flatter than flat. Truth be told, I am closer to concave. But, even in a tankini, I pass as an extremely flat-chested woman.

Passing as a woman with a flat chest versus being identifiable as someone who had breast cancer and chose to have her breasts amputated puts me in an uncomfortable, yet familiar, position.

Familiar because I am often mistaken for a straight woman. Over the years, I’ve made my peace with other people’s uncertainty (or mistaken certainty) about my sexual orientation. But passing equals a certain amount of invisibility and, while I won’t digress into a discussion about the pros and cons of passing as straight, I feel much more conflicted about passing as someone untouched by cancer.

Thanks to the “magic” of breast implants and prosthesis, most mastectomy patients pass with ease. And once you’re seated upon the breast cancer merry-go-round, the energy put into “saving the rack” (as one friend wryly put it) nearly equals the energy put into “saving your life,” and the importance of passing is a huge part of the sales pitch.

“You’ll look normal in clothes,” the plastic surgeon promised. “No one will be able to tell,” he assured me. But I wasn’t interested in fooling anyone. Especially when I dug a little deeper into what was involved. The first step is surgery to place two deflated, accordion-like, plastic devices between my chest wall and my pectoral muscles. The second step is to slowly, over as many as eight months to a year, inflate said accordions through a plastic straw sticking out of my chest. (Yes, like a blow-up doll.) As the “tissue expanders” inflate, they painfully  and gradually pull the muscles up and away from their moorings on bone. Remember, these are hard, plastic shells capable of pulling a person apart, so forget doing “crazy” stuff for the next year or so, like lying on your stomach or hugging. Then, the not-so-final step is surgery to remove the expanders and pop in silicone or saline implants. I say “not so final” because implants are notorious for leaking and, at best, must be replaced every 10 years. Apparently, I am one of only a handful of women to say “thanks but no thanks.”

According to an article in the October 2008 issue of the New England Journal of Medicine, roughly 180,000 women were diagnosed with breast cancer last year. Of those, two thirds opted for a lumpectomy with radiation; one third chose mastectomy; and 56,000 underwent reconstruction–double the number from just a decade ago.

Criticizing this save-the-rack mentality is akin to touching the third rail of breast cancer care. Thousands of women fought hard to require my insurance company to fork over $30,000 for a boob job. A great irony since they refuse to pay for BRACA1 and 2 genetic testing, which costs a fraction of the price and reveals surprisingly accurate information about a woman’s odds of having a cancer recurrences, either of the breasts or ovaries. But, of course, the results of my genetic test don’t look very good under a sweater.

I know I sound angry, and I suppose I am. I’m angry that breast reconstruction is a distraction; an easy way for women and their doctors to fixate on “breast cancer as make-over” while dodging the bigger issues, like the lifestyle and environmental factors that contribute to cancer rates and recurrences. Much less a frank discussion of how reconstruction makes future lumps harder to find because  breast implants obscure mammograms.

I’m angry that, if I had listened to the three different surgeons, all of whom recommended reconstruction, I might have woken up from my first surgery with tissue expanders in my chest, and I doubt I could have felt the cancerous lump left behind.

I’m angry that so little has changed in the 30+ years since Audre Lorde compared women offered breast prostheses after mastectomy to babies pacified with candy after an injection. That’s exactly how I felt when a nurse brought me two Nerf football-sized prostheses the morning after my double mastectomy. How can we still be here?

To be 38 and to have refused reconstruction makes me a rare bird. In a room of breast cancer survivors, my chest is the only one that resembles a 12-year-old boy’s. The local breast cancer center (where I go for the free massages) is the one place where I don’t pass as flat-chested. But instead of feeling embraced by my peeps, I feel rebuked. I get the distinct feeling that the “pink sisterhood” is not pleased. During one visit, as I waited in the lobby for the massage therapist, a staff member smiled cooly and handed me a brochure. Inside was information about a local non-profit group that purchases breast prostheses for poor women. She obviously assumed I was destitute because why else would a woman go out in public without her boobs?

As someone who has always felt like an oddball, I find my new “otherness” depressing. Of course, outside of the breast cancer community,  shouldn’t I just be content to pass? But invisibility is cold comfort. Soon after my surgery I read Lorde’s writing on the topic of invisibility and breast cancer and her words resonated deeply with me. In The Cancer Journals she writes:

If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies must become visible to each other. For silence and invisibility go hand in hand with powerlessness. By accepting the mask of prosthesis…we reinforce our own isolation and invisibility from each other, as well as the false complacency of a society with would rather not face the results of its own insanities. In addition, we withhold that visibility and support from one another which is such an aid to perspective and self-acceptance. Surrounded by other women day by day, all of whom appear to have two breasts, it is very difficult sometimes to remember that I am not alone.

Yes, her words are inflammatory, and, yes, her full-out condemnation of breast prosthesis is harsh, but I would trade every pink ribbon on the planet to see a few more flat-chested, 30-something, breast cancer survivors. To know that I am not alone in refusing to believe that a couple of new boobs will make everything okay.