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The Chatter About Jolie

May 19th, 2013

My bloggy friends have really hit some important notes about Angelina Jolie’s prophylactic bilateral mastectomies, a decision she made public in a recent editorial in the New York Times.

Jackie called out those who were judging her decision.

Marie wrote a good explainer about the BRCA gene and why its presence might lead to such a choice.

Nancy took up the issue of gene patenting and how the prohibitive cost of the BRCA test limits women’s choices.

Philippa reminded us of the stark global inequities in breast cancer care, telling some stories from Sri Lanka and Timor.

What could I possibly have to add?

angelina_jolie_13

Like my friends, I was asked by many to offer my opinion about Jolie’s choice. (I fully support it.) But since I have been hanging back on blogging, I was delighted to know so many smart and articulate people who cover the big issues when these Cultural Moments in Cancer happen.

Something struck me, though, amidst the media frenzy that has been less central to the ensuing conversation.

Women’s self-hating chatter about a radical surgery.

First there was a BRCA positive celebrity on an entertainment news program who talked about anticipating her prophylactic mastectomies. She told the interviewer laughingly:

It’s like a deluxe boob job!

Here is another exchange from a Facebook thread. Both women are educated –– Woman A is a doctor –– but the attitude is the same:

Woman A: I was tested!
Woman B: Were you really? It’s a little bit of a game changer once you realize you’re in any sort of high risk group, isn’t it?
Woman A: It was for me. I’m not willing to let a modifiable risk end my life. And, I’d have gotten new tatas…

 

Each time, my stomach dropped. This trivializes a body-altering operation.

I had a preventive mastectomy. A tumor presented in one breast, but I had to decide about whether to remove the healthy one as well. After genetic counseling, I was tested for the BRCA genes as well as a known mutation prevalent among Ashkenazi Jews. My genetic tests revealed no known genes, but the multifocal presentation of the tumor in my breast, my young age, and my ethnicity led four clinical oncologists to suspect some unknown genetic origin. Although I did not get a definitive risk like Jolie –– 87% is pretty clear cut in the medical world –– all these doctors recommended a prophylactic mastectomy.

I went ahead with the surgery. I got reconstruction, although mine was more complicated than Jolie’s because of the radiation I received as part of my treatment.

I have the new tatas that the women seem to joke about.

And you know what?

I really miss my old ones. We had a history together. I nursed three children with them. They fit my middle aged body. They felt much more than the ones I have now.

As I tend to do when something in CancerLand raises my ire, I posted the following on my Facebook page:

Just stop

As you can see, this got a lot of “likes.”

On that thread, somebody generously shared the following:

Immediately prior to formal diagnosis (i.e., after the lump was discovered but before the second biopsy), I found the idea of a “deluxe boob job” (and tummy tuck, woo hoo!) to be very comforting. When talking to friends, that’s how I framed it, because breast cancer was much easier to talk about in those terms.

I really appreciated this honesty. It gave me insight into this “boob job” framing.

And here is what it reveals about our culture and breast cancer:

It is more socially acceptable for us to dislike our bodies to the point of wanting to surgically alter them than it is to grieve the loss of identity and sensation that mastectomies require.

I notice that folks are not chatting as playfully about the oopherectomy (ovary removal) that Jolie plans to undergo. There is no soft-pedaling that operation. An oopherectomy means a sudden, surgical menopause. Friends of mine have described it, and it is not pretty. There is no femininity-preserving (or, to hear some women describe it, femininity-improving) reconstruction.

So my question is:
When women with ambiguous cancer risks undergo preventive mastectomies, how much does their own culturally acceptable body-loathing play into that “choice”? Can we call it a choice when there are obviously such strong messages that downplay the loss and pain and overplay the body improvement aspect of this surgery?

For information on genetic risks and breast and ovarian cancer, please visit FORCE: Facing Our Risk of Cancer Empowered.

This entry was posted on Sunday, May 19th, 2013 at 6:54 am and is filed under Treatment. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

28 Responses to “The Chatter About Jolie”

  1. May 19, 2013 at 8:18 am

    My career keeps me so busy and more so than usual last week. I hadn’t heard the “playful” banter regarding the preventive mastectomies from the general public or anyone else. That was until I asked my husband if he’d heard about Jolie’s decision and he said, “That’s just so she can get an upgrade”.

    • May 20, 2013 at 5:43 am

      Sigh. It’s hard to imagine Angelina needing to upgrade anything, but I guess that is the ethos of Hollywood and our beauty culture.

  2. May 19, 2013 at 8:39 am

    This is a really powerful piece of writing. It’s also an important cautionary tale for women considering this surgery as well as for women, like me, who are lucky enough (so far) to just talk about it. I’m “Woman A” above, and I did exactly what you called me out for: I used humor as a defense mechanism against my fear, my helplessness. Having cared for at least a hundred women who have gone through this life, mind and body-altering procedure, I have a glimpse into the reality, and should have also had more than my share of sensitivity. I didn’t, and I sincerely apologize. All the best to you, and wishing you a long and healthy life.

    • May 20, 2013 at 5:44 am

      I have so much respect for the ways you have reached out to me after this post. I hope you know I was not trying to call you out individually. I really see your exchange as a part of a larger cultural discourse — one we probably all fall into. Thank you for this. I feel like it’s why I blog.

    • May 21, 2013 at 11:18 am

      Humor is how I tend to deal with most things in life; without my sense of humor (indeed, my sense of the ridiculous), I’d have had a truly MISERABLE time dealing with cancer, a 12 hour surgery, and the pity of friends. Instead, I got them all laughing along with me.

      Yeah, I had one really good, soul-drenching cry. I’m thankful for a long phone chat with my sister-in-law, who shared that cry with me and told me how glad she was that I was still alive to have that cry. A coworker had delayed testing and found out, too late, that she had Stage 4 breast cancer, and had just died. Puts things into perspective. Yes, I also nursed two children with those lost breasts, but I wasn’t going to be nursing any more. My children are now 24 and 17. I’d rather focus on the life I still have than the things I’ve lost.

      Besides, crying only gives you a stuffy nose. Kind of adds insult to injury, there. :)

  3. Husband
    May 19, 2013 at 10:20 am

    My wife had a double mastectomy and it was the most physically and emotionally difficult thing she’s been through. Obviously chemo was no walk in the park, but she knew that was going to be tough.. Her terrific doctors tried hard to prepare her for how difficult the surgery and recovery could be, but every woman responds differently. Ultamately, her choice to have the radical proceedure was made based mostly on reducing the risk of reoccurrence, but the excitement about getting new breast that were firmer, bigger and sexier was also a consideration. I think it is easy to convince yourself that starting over and being able to choose the size and how they look is almost like the only upside to this horrible situation. I suspect few can deny that doesnt come into play and I think it is natural for people to have fun with the idea along the way. We certainly did and, as a result, I think she (we) walked into the surgery and the recovery with false expectations.

    I know she would make the same choice today, but no longer for an “upgrade” or starting over with “new tatas”. My wife does not consider her new firmer, bigger and sexier breasts as even a part of her body. She can’t feel them because the nerves were destroyed and, while they look terrific in clothing, she can’t help but feel like she was butched when she sees them bare. Is that an upgrade? No, it was a SACRIFICE she had to make to live. And that’s no joke!

    • May 20, 2013 at 5:47 am

      “I think it is easy to convince yourself that starting over and being able to choose the size and how they look is almost like the only upside to this horrible situation.”

      Yep. I think a lot of us do that.

      I like the sacrifice framing. It is much closer to my own experience than the “upgrade” idea. Thank you for this.

  4. Andrea
    May 19, 2013 at 10:53 am

    When I got diagnosed with cancer in both breasts, my first reaction was to “cut them off”. I felt like I had aliens attached to me. In all that shock during the first couple of weeks I did the same: I was talking jokingly about it, and saying I was going to get better boobs. I have always felt my boobs were too small and didn’t like them much, so my negative self image led me easily into that kind of thinking.
    The joking of course was a way not to feel my fear, and maybe part of another cultural pressure, to “be positive”. But when some men said something like “you can get nice bigger ones!” I found that deeply offending, and I realized what I had been doing.
    My own behavior has since bothered me a lot, because my first unconscious reaction was to perpetuate the negative image most of us have about our bodies, and because of the general unawareness of what it means to have your breasts amputated. I’m glad that A. Jolie helps to have a more public discussion about the issue.
    In the end I went with my doctor’s recommendation, did lumpectomies and was fortunate to be able to keep my breasts. They are now even smaller with scars on them, but one thing I have learned from this is to love and appreciate them as they are. I’m over 5 years out and good so far, though I’m aware that if I should have a recurrence I will have to face mastectomies, this time a lot more aware and informed.

    Thank you for your blog, and good luck and health to you.

    • May 20, 2013 at 5:48 am

      My purpose in this post was to put some brakes onto this discourse, a self-hating one that a lot of us just fall into. I don’t think you are at all alone. Thank you for sharing your story.

  5. Lisa K Hair
    May 19, 2013 at 3:33 pm

    I made up my mind years ago that if I were ever to get breast cancer, I would have both removed. I don’t care about having new tatas, nor looking “great” because I lost 45 lbs from the side effects of chemo and radiation treatments. I would choose this because I have a life, and I don’t have time for minor details like having or not having boobs. I want to live. Pure and simple. Body image is not a factor in my quality of life!

    • May 20, 2013 at 5:50 am

      I think, when considering reconstruction, it is absolutely essential to know yourself. For some of us, our body image matters a lot to our quality of life and our own sense of normalcy. Others, not as much. I have other friends who fall into your camp, and I think it’s great to make a choice like that when it genuinely reflects your own feelings and experience.

  6. BlondeAmbition
    May 19, 2013 at 11:13 pm

    I loved this piece and was happy to (finally ) see someone discuss the “genetically ambiguous” findings. I am in the same boat; tested negative for BRCA after being diagnosed with invasive BC. My mother was also 44 at her Dx and we are of Ashkenazi heritage. We also have other family history that concerned the team.

    Women have been unjustly vilified as “experts” cite that only 1% have the BRCA mutation.

    I think the only thing worse than finding out that you have the BRCA mutation and having to make a pre-emptive decision before you are diagnosed with BC is being diagnosed with BC and learning that you tested negative for the gene, despite strong risk factors and family history. We have to make this decision with our gut.

    • May 20, 2013 at 5:51 am

      Our gut and a lot of doctor input.

      Because of the ambiguity, though, our ovaries are off the surgical table. Hopefully, this will prove to be right in the long run. But I have learned that sometimes information can be a different burden than not enough, depending on what the options are.

      Thanks for your comment.

  7. May 20, 2013 at 3:31 pm

    Your post gave me shivers when I read your line about reconstructing due to poor body image rather than grieving the loss of a breast/talking about the cancer.

    I choose not to reconstruct. It had nothing to do with loss, or pain, or body image – I was just so fed up with being in a hospital. Though now I do put on the extra breast whenever I want to feel dressed up’ . . . so maybe there’s something to your question. ~Catherine

    • May 20, 2013 at 3:41 pm

      I got reconstruction. I do not begrudge anybody for making that choice. I do not begrudge anybody for making any choice about surgery, prosthetics, what have you. I just urge us to talk about these issues that pave the way for women to really reflect on what they care about and why, not feel like they are compelled to because of the way we talk about what is valuable about women’s bodies.

  8. Steen
    May 20, 2013 at 7:43 pm

    I haven’t had breast cancer or a mastectomy, but I was also disturbed by people talking about it as though it would improve appearance. I read an interview with one woman who had it done prophylactically, and she said that her “new breasts look better than the old ones.” And that made me very uncomfortable.

    Should I excuse people for saying artificial breasts look better than natural breasts if they are under those sorts of circumstances, given what they’ve been through? Is she just trying to look on the bright side? Or is it still that same old hatred of women’s bodies?

    Your article helped me think on this some more.

    • May 21, 2013 at 10:59 am

      If you click on Jackie’s post at the start of this entry, you will see her 10 commandments for breast cancer. One of them is not judging other people’s choices. When you haven’t been through cancer, it’s also important to not challenge their coping mechanisms (at least not to their face). I would not want to take away somebody’s purported gratitude for their “new girls” if that is what helps them feel okay. I’m just not that confrontational. Now, if somebody asked me if I felt that way, I would be as honest as I have been in this post. I think this is why this issue is tricky: women who have experienced cancer should not be judged, but I still want to call out the body-loathing that makes the celebration of reconstruction as more socially acceptable than the sadness of losing one’s breast.

  9. May 21, 2013 at 11:13 am

    It’s an interesting question. I had Stage 0 DCIS diagnosed in 2010; I opted for bilateral mastectomy with DIEP reconstruction (the “deluxe boob job with tummy tuck – woo hoo!!”) because:

    - Although I knew that everyone, including my wonderful husband, would love me just as much without any reconstruction at all, it was suddenly very important to ME to be able to look into the mirror and look – well, like ME. (And I had sufficient ab flab for it to be me – ALL me – which was a huge plus in my book!)

    - They can only do DIEP reconstruction once. So you can have one side or both sides, but you can’t have one, then go back 10 years later IF you get cancer again, and have the same type of reconstruction. They’d have to do something else. I wanted to look normal, balanced – and I wanted it to be ALL ME.

    - I didn’t want to go through chemo and radiation. I didn’t want to have to worry every year for the rest of my life, “Is it back?” My aunt had breast cancer. She fought breast cancer and malignant melanoma and finally lost to lung cancer 32 years after her fight started. Well, screw that. I’m more of a “Kill it, kill it, KILL IT!!” kind of girl.

    - I had good surgeons. I don’t look much different, now, than before this whole process started. The aches and pains are in different places, and I may never be able to do a proper sit-up again. ;) But I feel good and the whole ordeal is starting to fade to a distant memory.

    NO ONE has any right to second-guess another woman’s choices when it comes to what to do with her own body.

  10. May 21, 2013 at 3:51 pm

    I think you will like this article I wrote. It’s not always about risks but about the SYSTEM and the TRAUMA it puts you through. Time for a change. http://bit.ly/16nErz2

  11. May 21, 2013 at 5:13 pm

    Four different surgeons that were offering me different versions of: “you can have much larger breast \ It’s time to have the big breast you always wanted…! (Never did! cross my heart!)and the last one, that told me it was a good opportunity for fulfilling my fantasy of a bigger, higher, tighter breast! All by the way have never ever been MY FANTASIES…
    Great points Lany, thank you

  12. ringo
    May 24, 2013 at 2:57 pm

    On a completely different tack, how come nobody is mentioning Christina Applegate in all this. She made the same decision like ten years ago, made the same kind of announcement, and the media pretty much ignored it.

    • Jane
      June 3, 2013 at 12:56 am

      Great post and interesting discussion.

      The awareness raising which has resulted from Angelina’s article can only be a good thing.

      I am however upset by ignorant comments about how post reconstruction mastectomied breasts look better and will somehow be an improvement. (I exclude from this those who have actually been through it or who use humour to deal with the trauma). A reconstructed breast is NOT the same as a breast augmentation. It does not look that great naked, and it does not feel remotely natural. At least this is the way I felt and my surgeon was world class.

      ps I think Christina Applegate was in fact diagnosed with BC in one or both breasts and then had a double mastectomy.

  13. June 8, 2013 at 2:06 pm

    I too support her decision. The banter on this topic has just about killed me. I also had a preventative mastectomy which was “elective.” I had several friends comment on my getting my “free boob job” right before my final reconstructive surgery and it really broke my heart.

  14. Elizabeth
    June 20, 2013 at 9:56 am

    Last year, I found out that both my daughters had discussed (with each other) getting their breasts “hollowed out” and replaced with implants sometime after they’ve had their families, like in their 30s. Both are in their early 20s. This was long before Jolie. Why would two otherwise very normal young ladies consider preventative mastectomies without even knowing the term? Because I, their mother was going through some pretty horrific breast cancer treatments and my prognosis, well lets just say I was stage III then and am now stage IV. And my mother had had breast cancer. And my grandmother had died of breast cancer. And my aunt (father’s side) had breast cancer twice. And cousins……well, you get the picture.
    I am not a big fan of Jolie, but I admire that she opened the dialogue so high risks women know they can seek out their doctors to find what preventative options they have. And I totally understand her choice.
    By the way, I tested NEGATIVE for the BRCA gene mutations!

  15. Diana
    July 15, 2013 at 11:30 pm

    I thought Angelina’s story was quite heroic–surprising, and heroic–because her high-profile admission has the capacity to do so much good in bringing light to the subject of genetic risk, and because she didn’t have to make it public. I was furious when I heard the backlash against her, which still is fairly incomprehensible to me.

    Of course, I bring to this my own baggage. Two years ago I was diagnosed with breast cancer. I was treated at a major Midwestern research hospital, where my genetic counseling determined there was not enough of a cancer pattern in my family to even test me for BRCA (they deemed I had a less than .001% risk of the mutation). It was my gynecologist who, saying that any breast cancer under the age of 50 should always be tested, persevered in getting me the test. I turned up positive, which was a complete out-of-left-field shock, and has resulted in a total of 9 surgeries to date (including double mastectomies and a complete hysterectomy). But the story doesn’t end there.

    Six months after she nursed me through mastectomies and chemo, my mother was diagnosed with ovarian cancer. She also tested BRCA positive, of course. (And ironically, she had undergone a hysterectomy in the 1980s that left her ovaries and tubes in place, as was the norm then.) A year after that, my 50-year-old sister tested BRCA positive as well. While being proactive about preventative surgeries, her oophorectomy (done to reduce her risks) turned up ovarian cancer, too. Three of us, diagnosed within 18 months of each other, with no prior family history. The BRCA risks are all too real.

    To those idiots who say Jolie was seeking publicity or wanted bigger boobs, I say look at my family… And to Angelina (whose mother and aunt both died of ovarian cancer)–I applaud you.

  16. October 9, 2013 at 11:22 am

    I too just cannot fathom when people try to trivialize a mastectomy and reconstruction by saying “But now you get to have such nice, perky boobs.” It is SO not what the process is about. I don’t know a single breast cancer survivor who would have had a boob job if they weren’t undergoing a mastectomy and just wanted to look relatively normal in clothes afterwards. (I say in clothes, because we all know that reconstructed breasts don’t look anything near like our original breasts.)

    I applaud Angelina Jolie for her actions. With her family history and BRCA test results, she had every reason to take preventative actions. For the most part, I think the feedback about her was pretty positive and I thought she handled the whole thing with dignity. It’s a tough choice, one which every woman must make herself, based on what she is most comfortable with.

  17. January 3, 2014 at 2:20 am

    Women are the heavenly gifts of love and care to the mankind. Now, it’s our time to give them the respect and care that they truly deserve. We are sure; you will do the needful to retain the beautiful smile their faces. So, we appeal to you to please support us in carrying out this communication of social messaging to the lovely ladies you know and send them to us for free cancer screening.

    Every woman either her image like Angelina Jolie or poor women(Who are not able to afford breast cancer treatment) need our support.

    Best wishes to every women and Happy New Year to all…

    tHANK YOU

  18. February 7, 2014 at 3:12 pm

    Hello to everyone. My best regards to the lady that created this blog, for this particular subject. I had in my family a cancer incident, they say it can be inherited from the family, especially from mother to daughter, i am male and i always push my wife to go and check herself every 6 months!!!

    Well done once more for your great blog!

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