In the wake of Angelina Jolie’s recent announcement about her ovarian removal, I wrote a piece on my own decision-making process for Fusion.net.
In the wake of Angelina Jolie’s recent announcement about her ovarian removal, I wrote a piece on my own decision-making process for Fusion.net.
I had an eventful May 14. I woke up in the morning and read five messages from friends on my phone telling me that Angelina Jolie had announced her prophylactic mastectomy in a New York Times op-ed. I’d thought it would be just a normal day of reporting my forthcoming book Pandora’s DNA: How the breast cancer gene changed everything, but by evening I’d done several video appearances, ending up on All In with Chris Hayes (above). I also wrote about the public and media reaction to Jolie’s mastectomy for Today and Slutist, and appeared on CBS2 New York and a Japanese morning show.
You can also catch me on Huffington Post Live:
When Angelina Jolie announced that she carries a harmful BRCA mutation that will dramatically up her chances of developing cancer, I felt horrible for her, since I also carry and understand the burden of a BRCA mutation, but I also felt elated that she’d raised the profile of hereditary breast cancer and prophylactic mastectomy.
Then the “against-the-grain” news stories started rolling in. Many pieces missed a chance to inform the public about the BRCA 1 and 2 mutations, which can be passed on by both men and women, and account for some 5-10 percent of all breast cancer cases and all ovarian cancer cases although less than 1 percent of the population carries them. Instead, they chose to sensationalize Jolie’s choice to have a prophylactic mastectomy – a procedure that has been performed for women at high risk for breast cancer since at least the 1970s and is well-accepted as a valid treatment by doctors who specialize in BRCA patients.
How stupid do they think we are? It’s a major medical procedure, not a manicure. I can’t help but feel that the old insidious stereotype that women are irrational, easily panicked, susceptible to celebrity influence, and prone to emotional decisions underscores these worries about “unnecessary” mastectomies and a “panicked” horde of women refusing to come to terms with their cancer risk.
I should know: Three years ago, at the age of 28, I had a prophylactic double mastectomy and reconstructive surgery after learning I had a mutation of the BRCA1 gene.
I wrote about my experience for a number of websites, including TODAY, and tasted the vitriol and hate that can rain down from the Internet. Commenters made irrelevant remarks about my appearance, blasted me for wanting to have biological children despite my genetic mutation, and reassured me that I didn’t really need a double mastectomy because cancer is a fungus that can be cured with baking soda.
Two years ago, I had my healthy breasts cut off to reduce my sky-high risk of breast cancer. Last year, I wrote a post chronicling my feelings one year out, but two years out, my feelings have changed enough to warrant another (and perhaps final) post.
To recap, for those of you who are just joining us: I have a genetic mutation that brings with it a 40-85 percent lifetime risk of developing breast cancer (compared to a 12 percent risk in the general female population) and a 40-60 percent lifetime risk of developing ovarian cancer (compared to a 1.5 percent risk in the general population).
In addition, breast cancer in families with BRCA mutations tends to develop early and aggressively, which is true for my family. The average breast cancer patient receives her diagnosis at age 61, while in my family, the average age is 33. I chose prophylatic mastectomy, and later, I will probably choose prophylactic oophorectomy, because the other option is frenzied screening, which creates body anxiety and doesn’t prevent cancer, but simply catches it.
The Physical Recovery
In the last year, my feelings about my breasts have changed. When I wrote last year, I felt like I had two bowling balls strapped to my chest. I felt weak and tired and that my body wasn’t capable of doing things I wanted to do, like carrying heavy grocery bags or using my arms to get up from a sitting position. Another year of recovery and some hard-won advances in the gym have changed some of that.
Last year, I spoke about my strange new body – wearing new breasts is a bit like getting a new car; it’s hard to get the hang of new dimensions and so there are fender-benders in crowded rooms, illicit boob-brushes against strangers. Time has helped deal with that quandary – my new boobs are not so new anymore; I’ve gotten used to them. Presently, I execute three-point turns with aplomb.
In the first year after my mastectomy, performed with reconstruction, I felt both resentful and vain about my new body parts. I hated them; but I wanted to show them off. Either way, I felt guilty. I had plastic surgery because I wanted my body to change as little as possible; I thought it would insulate me from feeling the mastectomy as a loss, though of course it was. As poet and activist Audre Lorde wrote in The Cancer Diaries:
“Prosthesis offers the empty comfort of ‘Nobody will know the difference.’ But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women. 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.”
In other words, it’s a shame that women have reconstruction – it’s perhaps anti-feminist to have reconstruction, because it blinds everyone else to the ravages of mastectomy. Plus, numb reconstructed breasts reaffirm the status of breasts-as-aesthetic objects that exist for the male gaze rather than for the woman who wields them. I don’t fully agree with Lorde, but I also can’t deny the power of her words; reconstruction does hide the existence of mastectomy.
I wanted my friends to see my new breasts, not so much because I was proud (ok, so I was a little proud – my plastic surgeon did an awesome job), but because I wanted the people around me to bear witness to what I’d gone through, to make visible the psychic pain and physical changes I’d endured. I also wanted reassurance that no one would ever know from looking at me. And I wanted compliments of the type people want when they show you their new iPhone; look at this new gadget I have purchased, isn’t it great? I wanted confirmation of my decision. I had contradictory desires. I wanted everyone to look and acknowledge. I wanted no one to know.
Over time, I’ve accepted my state as a wonder of modern medicine, a boobless wonder that has been re-boobed. The new breasts feel more like part of my body and less like the latest gizmo.
And yet, two years out, I feel increasingly ambivalent about my operation. When the wounds were fresh, I had to believe that I’d done the right thing for the sake of my own sanity and my own healing, cheered on by the rah-rah you-go-girl element of breast cancer culture, simultaneously heartening and repellant.
It’s hard to remember exactly what caused me to have a mastectomy, the all-consuming the fear of breast cancer that subsumed me after I received my genetic results. The six months between diagnosis and mastectomy were the most miserable months of my life, fraught with uncertainty, terror, dread and hopelessness, emotions that only total elimination of my risk — no matter the cost — could cure.
Before surgery it was hard to understand what expressions like “you will lose nerve sensation in your breasts” really meant. Now I have a lived experience that undercuts the throw-away simplicity of that clinical phrase, numbness considered as an incidental side effect. At the time it seemed like a small sacrifice, one thrust on me by circumstance. Still, I have to live with the knowledge that I gave away something incredibly precious of my own volition. The responsibility for my disappointment — my numbness — lies entirely on me, no matter how much I’d like to transfer it to a strand of DNA, or the failures of medicine to live up to my desires.
Still, if I had it to do over, I’m sure I would make the same decision. I couldn’t live in limbo between sick and healthy.
Looking Forward to Oophorectomy
Rather than “curing” me of my fear and anxiety over getting breast cancer, the surgery also transferred some of that fear to ovarian cancer, which is a really effing scary disease for a couple reasons:
In addition to the fact that there aren’t effective early detection tests for ovarian cancer, its symptoms will appeal to any latent hypochondriac tendencies you may have. They’re so general as to encompass nearly any illness: Does your stomach hurt? Need to pee a lot? Lost appetite? Are you fatigued? Have heartburn or back pain? Skip a period? For this reason, in our house we joke that everything that goes wrong is “probably ovarian cancer.”
Finally, I’ve also been renegotiating my conception of my own femininity. I have never thought of myself as a particularly girly girl. My mother jokes that she hasn’t been able to get me to wear pink since I entered my black period in third grade. I always thought of myself as person first, woman second. But the mastectomy threatened my femininity, and I tried to reclaim it by doing things I wouldn’t have been caught dead doing during my head-shaving college years, like plucking my eyebrows.
I still think of myself as person first, vagina-haver second. Yet, if that’s true, why did I opt for reconstruction instead of just living with a flat chest? Why has my interest in time-consuming ladylike niceties persisted? Maybe I am finally free to be feminine now that I’ve extirpated the negative, cancer-causing part of ladyhood. Or maybe I’m still gender-anxious because I removed bodyparts visibly and loudly associated with femininity in our culture. Or maybe modern marketing — which tells women that they are never X enough — has finally eaten me, the door cracked wider by the new and special body anxiety the surgery permitted.
I’m glad that these issues are on my mind, for me, at least, it’s a sign that after two and a half years of disruption, I finally feel back to my normal old self. Or maybe it’s ovarian cancer.
Read more about BRCA and my mastectomy on my blog:
Image is The Agnew Clinic by Thomas Eakins.
A year ago today, I cut off my healthy breasts to reduce my astronomical chances of developing breast cancer. The months leading up to the operation were brutal, to say the least. It was the hardest thing I’ve ever done, but I’m really glad I did it.
I have the BRCA 1 genetic mutation, which carries with it a 40-85% lifetime chance of developing breast cancer. While breast cancer in the general population generally strikes after menopause, for BRCA 1 women, the age of diagnosis can be much younger. Many women in my family developed breast cancer in their 30s, but my mother holds the record for youngest diagnosis — she learned she had cancer just a few weeks before her 31st birthday.
I didn’t want to cut off my breasts, but it’s what I had to do to feel safe. While it’s amazing that science could pinpoint my risk of cancer, it didn’t leave me many options. My choices were to expose myself to an emotionally draining barrage of tests a couple times a year, tests that began coming back with assurances like, “that thing we found on your scan is probably not cancer,” tests that don’t prevent cancer, simply catch it early. After watching my mother struggle with cancer, I decided I couldn’t play chicken with my life like that. I could have taken estrogen blockers that would have reduced my risk as long as I took them. Of course, taking estrogen blockers means undergoing temporary menopause, and as a BRCA 1 carrier my lifetime risk of ovarian cancer is 40-60%, with most doctors recommending an oopherectomy after child-bearing is done. So I already was and still am facing early, surgical menopause. My final option was to take the breasts off entirely, permanently reducing my risk to less than 5 %. I chose certainty.
My new breasts are cosmetically appealing, or so I have been told by doctors and bra saleswomen, but I still miss my old ones. Because taking out the breast tissue cuts through nerves, I’ve lost a lot of skin sensation. This winter I noticed that my breasts can’t get cold, for example, because there is no feeling. Sometimes it’s awkward to slither past a stranger in a crowded room, only to realize later that my senseless boobs must have bumped against him or her. From time to time I get an itch I can’t scratch because there are no sensation receptors left in my skin. This permanent numbness, reminiscent of a dentist’s shot of Novocaine into an inappropriate body part is the worst thing about the surgery.
Without my breasts, my real breasts, I mean, I felt strangely incomplete, deformed, ugly. As if I were faking an identity I no longer had claim to. In response, I became excessively girly. Jeans left my wardrobe, to be replaced with a strict diet of leggings and dresses, preferably in funereal black. I never let anyone see me without makeup or in sweatpants. I felt dishonest about my new body, as if my personal appearance, my faked cleavage, was presenting a lie to the world that belied who I really was. I was pretending to be a normal, natural female, when in fact, I consisted of medical-grade silicone held into place by a donated collagen matrix (read: skin harvested from the backs of corpses and stripped of DNA).
While I was glad the surgery was over, the months that followed were dark, bleak ones for me as I wrestled with these emotions, emotions that I even felt a little guilty for having — I mean after all, it’s not like I had cancer or anything.
Still, the best thing about the surgery is that the threat of breast cancer no longer hangs over my head. It’s hard to overstate that, since I have no conscious memory of being without that worry. After all, my mom first developed cancer when I was 18 months old. In some ways, I share the fate of my mother and grandmother (and aunts, great-aunts, first cousins once removed) — I’m going to my grave without my real boobs — but I do feel I’ve dodged the bullet. I don’t have to have chemo. I won’t lose my hair. I won’t have to spend years living with the shattering uncertainty that the cancer might recur. And I’m so glad I don’t have to.
Want to read more about my zombie boobs?
Preserved: Fresh Salmon, Parts of My Body
Today Show Article: I’m 27 and about to have a double mastectomy
Daily Beast Article: Goodbye to my breasts
Today Show Appearance
Two Years After Mastectomy
I appeared on the Today Show on October 7, 2010 to talk about what it’s meant to have the “breast cancer gene” and my prophylactic mastectomy:
Here are the earlier columns on my surgery:
I’m 27 and about to have a double mastectomy (TodayShow.com, October 2009)
Preserved: Fresh salmon, parts of my body (February 2010)
Goodbye to my breasts(The Daily Beast, April, 2010)
Four days before I amputated my breasts, I had a theme party for them. My husband and I served martinis—boobtinis, actually, with two olives, of course. We wrapped melons with prosciutto, and since we couldn’t find a breast of veal to braise, we settled for butterflied chickens.
The party had two purposes. First, I wanted to celebrate 28 years of living with my born body. And second, I wanted to distract myself from the reality that in four short days I would be missing body parts I deeply valued….
The rest of the essay is over at The Daily Beast. Questions or comments? Feel free to post them below
Anyone who reads my blog is probably aware that I have an unholy obsession with preserving foods, and that in 17 days I will undergo a life-changing operation, a double-mastectomy with reconstruction done on my healthy breasts.
I’ve always cooked, and frankly eaten (hello, new 20-lb gut), to deal with stress, but lately, perhaps because I’m amputating body parts, we’ve taken that to extremes. During a 3-day jag last week we made bread, banana bread, cookies, cured salmon, canadian bacon, chicken gyros, pierogis, spatchcock chicken, poached salmon and tzatziki. I swear I inherited this from my father, who once bought a whole ham for himself and the six-year-old me while my mom was in the hospital with cancer. My marriage’s recent focus on charcuterie, eaten, of course, with homemade pickles, is really a focus on preserving the current moment, which for me means the last few days with my natural breasts.
Last week, my husband and I took this idea of preservation from the metaphoric into the literal. On Thursday we removed the stiff salmon from its cure and set the cured pork tenderloin in a low oven to dry into Canadian bacon, and then I asked my husband to cast my chest in plaster, so I’d be able to remember what my breasts looked like.
With cans of beer in hand, he laid the wet bandages across my chest; in a few weeks they will be replaced with real bandages. I could feel the cool plaster molding to me, but slowly, it grew stiff, and I could no longer feel his hands smoothing the edges of each strip down, just pressure on top of the carapace that had become my chest. I wondered if this is how I will feel after I recover, because the operation comes with permanent loss of nerve sensation in my chest.
When the plaster was as stiff as the salmon we’d taken out of its sugary cure, I peeled the cast off. It’s a nice, light, and rectangular, but looks vaguely funeral, disembodied, like the work of sculptor George Segal, like my breasts are about to be.
When I decided to write a piece about my decision to have a preventative mastectomy I never imagined it would generate so much response.
Over the last few days, I’ve received dozens of emails from readers in similar situations, notes of support from other women who’ve undergone the procedure, and tips about what to have on hand after surgery — a stack of videos, projects, and most importantly, button down pajamas. Friends, relatives, and associates came out of the woodwork to share personal stories about their own, or their families’ struggle with cancer. I feel really well-supported — thanks to everyone for all their notes, comments, and other messages.
Of course, the Internet peanut gallery was not so kind. On Newsvine, my article had received, at the time of writing, 163 comments. While a substantial number of them were supportive, and the volume, by its nature, was tremendously exciting, many posters used the space to blast my decision. People wrote that I am irrational, whiny, should not procreate, and that simply adjusting my diet by becoming a raw foodist, or adopting ayurvedic medicine would negate the need to have this procedure. We even proved Godwin’s Law in only 40 comments.
Over at GoodbyeToBoobs, another member of the BRCA coterie mounted an excellent defense of my article — thanks for sticking up for me!
However, I want to state a few things for the record:
a) Having the gene is not the end of the world, in fact, I’ve managed to live a productive and happy 27 years and intend on living many more. If my future kids end up with the gene, it’ll be sad, but again, they can still lead happy and full lives.
b) I’m sure that diet and exercise affect cancer risk. But we’re talking about a risk as high as 85 percent. I doubt very much that exercise or diet could lower my personal risk significantly enough to rid me of the cancer creepies. Plus, from a scientific standpoint, I’m not going to rely on “this vitamin supplement totally cured this one dude’s cancer” to reduce my risk. Sure, the western system of medicine often doesn’t care for the spirit of patients, but it does a damn good job of keeping people alive.
c) I’m not crazy. I just have a low tolerance for risk, and there is substantial evidence that my personal risk of developing cancer is more than 50 percent. Would you play a gambling game if you knew you had a 60 percent chance of winning? A 50 percent chance? A 15 percent chance? What if the stakes were your life?
In the run-up to my surgery, I may post more on the topic in this space, so stay tuned.