Choosing Not to Reconstruct

Why a Double Mastectomy? It’s Complicated

Last week a new study with an inflammatory headline went viral: “Double mastectomy ‘not necessary’ for most women.” The study, from the University of Michigan Comprehensive Cancer Center, found that 70 percent of women who had a double mastectomy following a breast cancer diagnosis did so despite a very low risk of facing cancer in the healthy breast.

What troubles me about this genre of breast cancer research is the finger-wagging tone. Full disclosure, I had a double mastectomy without reconstruction in 2009. I was 38. I knew the risk of cancer appearing in my other breast was relatively low, but I made the decision that was right for me. In choosing a double mastectomy, I was in the minority. Only 8 percent of breast cancer patients opt for double mastectomy. That means, 92 percent of us choose something else. So why does that 8 percent drive researchers to distraction?

I picture breast cancer researchers in their labs, their clinics, their meetings, scratching their heads and asking themselves, “why do these crazy ladies lop off their breasts? They obviously don’t have the facts. They are making an emotional decision based on fear and anxiety.” And, for some women, that might be true. They might not know that (for most) a diagnosis of breast cancer in one breast does not increase the likelihood of breast cancer recurring in the other breast. They might decide out of pure fear. But I’m guessing the real reasons why 8 percent of breast cancer patients choose a double mastectomy are much more nuanced.

My decision to have a double mastectomy was complicated. A big factor for me was not wanting to have one breast. It might sound silly to some but I didn’t want a singleton. I wanted to be able to wake up, pull on a t-shirt, and walk the dog. That didn’t feel like too much to ask. I didn’t want to have to wear a prosthesis just to feel “even.” Reconstruction, which solves this problem for a lot of women, was not a good option for me. Another factor in my decision was that my remaining breast no longer felt sexy. I feared it would become a lonesome reminder of a terrible time in my life. Plus, I wasn’t planning on having children or breastfeeding.

For me, a double mastectomy made a lot of sense. But my reasons were all very personal and, therefore, difficult to measure in a research setting. I’m guessing other members of the double-mastectomy club have equally complex reasons for making the decision we did. Why must researchers continue to spend good money trying to figure out why we weren’t more swayed by data? Got research money to spend? Spend it on saving women’s lives not second guessing our decisions.

 

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.

So Much for Passing

There is no passing when you’re naked. That’s what I learned on my summer vacation when Mary and I went to Orr Hot Springs, near Ukiah, California. For more than ten years the hot springs has been one of our favorite retreats. Some of our first canoodling was in a tub at those Springs and we make a point of stopping for a night or two anytime we are north of San Francisco.

I love the remoteness of the Springs, tucked away in a fold of hills between Ukiah and Mendocino. I love the smell of sulfur and hot brakes that greets you when you throw open the car door at the front gate. (The car’s brakes smoking from a descent ripe with hairpin turns and bedazzling views.) Most of all, I am intrigued by the hippie-dippy folks it attracts. Women with lazy smiles and wavy, Rapunzel hair who swim like mermaids. Men with bodies wallpapered in tattoos who convey no other vocation than simply drinking in the goodness of life.

Thirteen years ago, during a yoga retreat at the Springs, I got naked in public for the first time—no small feat for a Catholic girl from Kentucky—but I’m afraid this trip may have been my last. My first post-mastectomy foray into buck-nakedness made me acutely aware of how much smack I’ve been talking about passing. Mea culpa. Unlike people who’s scars are highly visible, I am lucky to have the option of passing  as a flat-chested woman. Strutting my naked, breast-be-gone stuff was tough. Much tougher than I expected.

From the moment I slipped into my first soak, the feeling of loss was akin to taking a bowling ball to the gut. Not a loss of my breasts, per se, but the loss of comfort in being my bare-naked self. I felt ugly and scarred. I felt alone. I wanted to hide behind my towel, Mary, a fig leaf…anything I could get my hands on. Yes, I know my scars are still fresh—figuratively and literally. And, sure, showing up naked after such an ordeal is “brave.” Whatever. None of that seems to matter. What matters is that, for the first time in my life, I wanted nothing more than to take cover, and that felt shitty.

Breasts: More than meets the eye

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

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.