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.

My most recent post touched on some hot-button issues, so I’m going to take a moment to clarify. I didn’t mean to open fire on a woman’s right to choose reconstruction. What I am incensed about is a society that narrowly defines not only what choices women have, but also what choices women can envision for themselves. I take offense not at the choices women are offered within the structure but with the structure itself. I’m no feminist scholar (some of my best friends are and maybe they will chime in), but I think this touches on one of the core fractures between liberal and radical feminism.*  

More specific to my experience with breast cancer, I take umbrage with the fact that I consulted four surgeons—two breast cancer specialists, a general surgeon, and a plastic surgeon—and not one of them mentioned going flatchested as a viable “choice.” Instead, my “choices” were laid out like so many confections on a silver platter. Each and every item on the menu involved saving the tatas, and, as a good breast cancer patient, my job was to choose the one that looked the sweetest and not ask questions, especially regarding, say, pain, recovery times, or (god forbid) complication rates.

When I made my “non-choice,” I was treated more like a stubborn child who refused to eat her veggies than a well-informed woman who made a thoughtful decision about her health care. In refusing to play along, I felt dismissed as an anomaly. And I’m guessing I was.

Last month, in a short email exchange on the increasing number of women who choose reconstruction, Marisa Weiss, MD, founder of BreastCancer.org and a leading breast oncologist, wrote, “Most women whose surgeons bring it [reconstruction] up will pursue it.” For me, this observation begs a more complicated question–not about choice but about framing. How are the surgeons bringing up the topic of reconstruction? Or even of lumpectomy versus mastectomy? How do their own biases weigh into the discussion? Physicians are only human. They can’t possibly divorce their own loaded feelings about breasts from conversation with their patients. Or can they?

A couple of years ago, I posed similar questions regarding surgeon bias to Dale Collins, MD, director of the Comprehensive Breast Oncology Program at Dartmouth Medical School. Collins is a plastic surgeon who specializes in breast reconstruction. “The reality is that doctors push and pull in both directions, and they will typically pull patients in the direction of their bias every time,” she says. Then she added, “And a lot of surgeons are men, and men presume that women don’t want to part with their breasts.”

Whoops, now I’ve gone and gotten all down-with-the-patriarchy on y’all. And didn’t you just know it was coming? After all, I am a man-hating lesbian separatist. But, seriously, this circles back to my point about questioning the structure, not a woman’s right to choose her own chest. I don’t want to take away a woman’s breast implants or deride her desire to replace the breasts she lost to cancer. (God knows I miss mine every day.)  I just want to see the choice to go “flat-and-fancy-free”  right next to the choice to get triple-layer tatas with fake nipples on top on breast surgeon’s dessert menus. Because if a woman truly felt that she wouldn’t be seen as “less than” for being breast-free, I can’t help but wonder if more breast cancer chicks wouldn’t gravitate toward the flat side.

 

 

*Special thanks to my sweetie for helping me to think this stuff through during our many long walks together. You are amazing in every way. 


The Season of Breasts

June 15, 2009

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.

Post-Mastectomy Blues

March 8, 2009

I’ve got the post-mastectomy blues, and they’re bumming me out. 

Here’s what I want: I want to be relieved the surgery is over. I want to be elated that my “cancer broach” is no more. Basically, I want to be more like my neighbor. (Since my neighbor hasn’t exactly agreed to be in my blog, let’s call her Ruth.)

Ruth is in her 50s. Her family history is sprinkled with breast cancer the way some people’s families are peppered with red hair or blue eyes. She’s one of four generations of women with doomed breasts. I think it’s safe to say that Ruth felt stalked by breast cancer most of her life. Last summer, when the diagnosis finally came, she jumped at the chance for a double mastectomy–no reconstruction, no regrets. Her attitude? Good riddance. On her first day home from the hospital, Ruth bounced over to show us her scars. Beaming, she was all praise for the surgeon, for her decision, for her choice to go without reconstruction.

Flash forward to a couple of days ago. I’m on my first tentative walk. Cradling my stunned chest. My 68-year-old Mother is awkwardly steering our 75-pound dog. Suffice it to say, I’m praying for anonymity. Ruth drives by. Sees us. Slows down. Flashes a huge grin. Tells me I look great (I don’t). Then, unexpectedly, tosses her head back and, with a raucous laugh, says, “you’re one of us now, we flat-chested chicks gotta stick together!” Then she rolls up her window and drives off. Pink-ribbon decal flashing. Here’s what I want–I want to rock my flat chest like Ruth, but I’m not even close.

Here’s where I am: I’ve been crying more than I’d like to admit. I cry mostly for my breasts, for the loss of something uniquely mine, for the violence done to my body in service to “health.” I cry for the lack of words I have to describe how horrifying it is to see dark red gashes carved across my chest where my breasts used to be. For how, in the absence of breasts, my rib cage looks bizarrely shaped and bony. For how, without breasts to balance it out, my stomach looks strange and distended. When I look down I only see what is missing. A voice in my head keeps asking me: why? Like an inconsolable child asking why something dear is no more. The voice isn’t soothed by the grown-up rationale behind the double mastectomy. 

I want to be happy-go-lucky. I want to be the “good” breast cancer patient. The chin-up, move-on, get-over-it person. Like Ruth, I want to throw my head back, laugh raucously at my crazy-flat chest, make jokes about having the perfect breasts at home nestled in their drawer, like a favorite outfit, waiting for just the right occasion.

But I know that’s not me. I’ve never been what you’d call a sunny or even an optimistic person. I’m okay with that. I like to set my expectations low and be pleasantly surprised when things aren’t a complete disaster. Deep down, I know this will be okay. Someday. But, in the meantime, I’m glad there are people, like Ruth, to show me what is possible. To forge ahead and send up a flare. Just in case I should ever want to join in the fun.

One Day and Counting

March 2, 2009

I feel ready. Ready to get it over with. Ready not to have a cancerous lump clinging to my chest anymore like a broach. At night, strange thoughts wander past: is it better or worse to have a cancer you can feel? a tangible tumor? If my tumor was deep inside my body, would it be more out-of-sight, out-of-mind? 

My initial reaction to the lump was panic. I wanted it out, and I wanted it out right now. Ever-helpful, Mary jokingly offered to rip it out with her teeth…a line she still uses when I need a laugh. But I’m glad I took my time. I know a lot of women make rapid-fire treatment decisions but that’s not my style. I needed the first two weeks to absorb the shock. The third week to wrap my head around my options. The fourth week to accept my choice.

Last year, I wrote  a story for Time.com about how surgeon bias can influence women’s decisions around choosing lumpectomy versus mastectomy. Reporting this story was an eye-opener but living the experience was sobering. As predicted, all three breast cancer surgeons recommended a lumpectomy with reconstruction. None of them asked me how I felt about having an implant in my left breast, instead it was all about how quickly I could regain the “appearance” of a breast. All three bent over backwards to assure me that no one would know the difference. No one like whom? I wondered.  They coo’ed that I would look “normal.” Normal for whom? 

The Ken-doll plastic surgeon talked at me for an hour and I didn’t like what he was selling. After all of these years and millions of women come before, how is it that my choices are a) harvest parts of my own body that I’m happily using elsewhere (thank you very much) b) saline or  c) silicone (of course, he didn’t mention the 10-year life span on those pups). Want your nipples? Sorry. Want sensation in the giant swath of skin from navel to clavicle? Sorry, no can do. What could “Dr. Feel Good” do for me? As it turns out, nothing. Because what feels good to me is getting this damn tumor off my chest, and escaping this ordeal with all of my muscles in tact, and as few man-made objects in my body as possible. 

Thanks but no thanks.

One Week and Counting

February 24, 2009

I’m scheduled for a double mastectomy a week from today: Tuesday, March 3rd.

I’m guessing some of you might be asking yourself: how does a self-described indecisive person make up her mind? isn’t a double mastectomy a little drastic?  but my [insert name of sister/neighbor/friend here] had a boob-sparing lumpectomy…why in the world would catherine choose to cut off her breasts? Here’s the scoop on how I came to decide on the big “double M.”

To know me is to know that I am a small-breasted woman. I love my breasts. I love all breasts. What I didn’t love was the mental image of what my itty-bitty titty would look like after half of it was scooped out and the other half was nuked for six weeks. Aside from the potential side effects of radiation, such as bone-numbing fatigue, scarring, skin texture changes, and, in some cases, cancer (just what I need), I didn’t like what I saw. I envisioned something between a prune and a raisin–an unseemly picture the plastic surgeon did not contest.

What he did do was offer to slice a muscle from my back (or abs), thread it up into the cavity that was my breast, and wrap it around a nice, new implant, like a bow on a present. He presented this idea with a wink and a smile, like I was crazy not to jump at the chance.

Okay, let’s get this straight. I’m supposed to sacrifice muscle for a nipple-less lump of half flesh, half silicone (oh, and by the way, that implant will need to be replaced every 10 years). Hey dude, I’ve worked way too hard for those muscles for you to carve them up and rearrange them into boob-like shapes. Not to mention, I’d rather use my muscles for rock climbing and handstands. Um, thanks but no thanks. I’m going to need all the strength in every one of those muscles to get me through this and whatever else comes my way.  

To be continued…