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.

The Background

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.

Ambivalence

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:

  1. There are no good detection tests for it. This may explain why…
  2. 70 percent of ovarian cancer cases are caught in Stage III or IV (on a scale from I-IV, with stage IV meaning “the cancer has spread all over your body”).
  3. The five-year survival rate for women with ovarian cancer is 43.8 percent.
  4. Dying of ovarian cancer (or really, of disease in general) isn’t pretty. One of my female relatives spent years in and out of comas, wheelchair-bound after the cancer spread to her spine before it finally killed her.

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.”

Gender Anxiety

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:

Preserved: Fresh Salmon, Parts of My Body
My Today Show Article: I’m 27 and about to have a double mastectomy
My Daily Beast Article: Goodbye to my breasts
Today Show Appearance
A Year Later

Image is The Agnew Clinic by Thomas Eakins.

Two Years After Mastectomy
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5 thoughts on “Two Years After Mastectomy

  • March 4, 2012 at 7:45 pm
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    Thank you for posting this frank and honest entry, and I hope your “self”, the physical, mental, and emotional you–continues to synchronize and rise in wellness.

  • Pingback: A Year Later » Journalist, Editor, Author of Leaving Mundania

  • February 19, 2016 at 2:40 am
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    Hi, I am a 34 year old that has almost the same story you do. The big thing difeerfnt is that I had to go almost a year before I could start my reconstruction. I withdrew from everyone and everything I enjoyed in life including my 3 beautiful blessings, My children. On April 2nd 2009 I had a double mastectomy done because I carry the breast cancer gene and over 80% of my breast tissue was cystic. I have watched my birth mother go through breast cancer 3 times before I decided to have the surgery done. Since then my birth mother has been diagnose 2 more times and and they cant do anything else for her. I also have two sisters that have been diagnosed and my grandmother was diagnosed almost 11 years ago and has refused treatment. I, too, have had the skin spacers put in and that is as far as I have gotten because I dont have insurance. The only reason I have the skin spacers is because my then 9 year old son sent an email to a plastic surgeon in NY and asked him if he could help make his mommy smile again. The plastic surgeon had me come in and I explained that I didnt have insurance nor the money and he done everything except the anesthesia pro-Bono. That was 03/19/2010. I went for 4 appointments for the fills on my spacers and now Im out of money to finish the rest of the process. I am sharing this with you not because I want help, but to say that I too admire the courage you have had throughout your experience. I pray everyday that not only will one day I will be able to take my clothes off and see a normal looking chest instead of two mounds with scars across them. My experience has really messed with my mental aspect and I dont even want to shed my clothing for my husband who has stood behind and supported me 100%. So I ask that you too keep praying and keep your courage hun. God Bless you and I will keep you in my prayers as well as all women who face this terrible monster.yours truelyMelissa AdamsWeston, WV

  • December 5, 2016 at 10:18 pm
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    Thanks for sharing. I am 5 days out of my surgery and am hourly surprised by the overwhelming sense of emotions…having the BRCA gene, losing my mom to Pancreatic cancer and having a husband who just doesn’t quite understand the back story to this surgery I have survived.
    But we carry on. Because we must. Because I have 4 children to think about. Because all we can do is the best we can with the information we have at hand and pray we have used it well.
    Wishing you well…always.

  • March 23, 2017 at 2:08 am
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    I can relate to all of you, I just had my surgery of this year of January 2017. and still recovering, I say that this breast expander feels really weird. and seeing my breast not having any more nipples makes me feels sad. and I try to stay positive for the sake of my family. My aunt also had the same surgery, she was stage 3, she’s doing a lot better. its been 3 years. my mother died in breast cancer stage 2.

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