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.
Thank you for not staying silent and letting us see into the window of what your process has been and continues to be. We see you! We care! Hugs to you.
Thanks Catherine. This was well said.
I’m angry with you, Catherine. When my mom was diagnosed, her doctors basically refused to perform a double mastectomy and pushed for reconstruction, which turned out to be the most painful and debilitating part of her cancer journey. That is until three years down the road when she was diagnosed with cancer in her other breast. And now the doctors are unwilling to discuss undoing the original reconstruction so she can just be balanced and, hopefully, done with cancer for good.
Oh Kim…I am so sorry, I had no idea your mom was going through this. Emailing you “off blog”…
You make your case well, Catherine. I love your writing and Audre Lorde always inspires awe. I had no idea that so much was involved with reconstructing breasts (and I personally like the flat-chested look). But … I can’t help but think that the choice of to reconstruct or not to reconstruct (in Shakespearean language) is better than no choice at all.
I agree that to stay silent, to “pass,” if you will, comes with a price, but perhaps many women want the reconstruction partly because they do not want to be identified primarily as “cancer survivors,” or to be defined by a disease. Is that not their decision to make?
Part of the issue is, of course, that the female breast is loaded with meaning and associations and symbolism beyond their actual purpose (the nursing of young).
In any case, I more than respect your decision. Reading about your experience has opened up my eyes to the utter and complete invasiveness of breast reconstruction. But I wouldn’t want that decision to be made for me–in breast reconstruction or anything else involving my body. Thanks for making me think. Peace (and still hoping to see you in August), Clare
Clare, Thanks so much for your thoughtful comment. I am absolutely open to all opinions on this matter, and my feelings on reconstruction, passing, and even my own choice to have a double mastectomy morph in color and shape every day, so please know that all of this is a work in progress. My reply to you got so long, that I decided to make a new post out of it : )
Thanks for writing truth to power, about mastectomies, the pink-verse, and reconstruction. I can’t tell you how reassuring it is to read thoughts that resonate so powerfully with my own experiences, which I wrote about here –
On Mastectomies and the Recon Culture
Keep writing. It’s so important to speak out. I hope I get to meet you some day.
I am not sure how I so fortunately stumbled upon your blog. I am one week post op from my double mastectomies for bilateral cancer. I have been adamant about not reconstructing myself for many of the same reasons you have shared in your writings. I did sit through the boob sales lady’s lecture aka the plastic surgeon and felt mortified about every option presented. Of most importance, my husband, my mother and my three beautiful boys have been very supportive of my decision to not reconstruct. The medical community, on the other hand, has not been supportive at all even saying my decision is controversial. I do know that later and do a little bit now grieve the loss of a part of myself but know if I had woken up with someone else’s boobs crafted on my chest that I would grieve every time it would see them. Thank you for writing about your journey. I look forward to reading more of it these next few days as I sit here waiting for the drainage to lessen to get these tubes out. Uncomfortable is the wrong term for them. More like a hot poker to the chest with every movement. Thank you again!
Dear Julie, I’m so glad you found my blog too! Stand strong. I’m five years out, flat chested as hell, and while I miss my boobs I made the best decision for me and my body. Be well.