Harmonic Convergence

When the planets align in the breast cancer universe things get interesting.  It has been an unprecedented four-five weeks.  The first planet to get into position was that of oral arguments delivered to the Supreme Court of the United States on the legality of the U.S. Patent and Trademark Office’s practice of granting patents on human genes.  The next two planets to align were the publication of Peggy Orenstein’s game changing New York Times article “Our Feel-Good War on Breast Cancer” and the news that Nancy G. Brinker™ received a 64% pay raise.  The fourth planet to line up was the announcement that a Reader’s Digest poll named Brinker™ one of America’s most trusted celebrities (a list that includes Pat Sayjak, Clarence Thomas, and Rachel Ray).  The fifth planet to assume its position was the death of breast cancer advocate Barbara Brenner.  And the sixth and final planet–with rings and moons–was Angelina Jolie’s New York Times op-ed in which she announced that she had undergone a prophylactic bilateral mastectomy.

CaptureAs these events converged, the Twitterverse and Blogosphere went Super Nova.  In a universe where the biggest news is usually who had their latest surgery, who delivered the latest salvo against pinkwashing, and who got lost in a #BCSM TweetChat, this sequence of events has been–in a word–epic.

I will devote the next few blog posts to a breakdown of this confluence of events.  But for this first one, I’d like to look at Peggy Orenstein’s article “Our Feel-Good War on Breast Cancer,” (New York Times, April 24, 2013).  This article is a game changer, and I am not really known for random hyperbole.

While I enjoy anything that intelligently unmasks organizations that have lost their way in that way that Komen™ has, my thrill came from Orenstein’s  exploration of a topic that is controversial and by virtue of that presents an opportunity to start a conversation.  In this case, D.C.I.S. and preemptive–or prophylactic–mastectomy.

There is as yet no sure way to tell which D.C.I.S. will turn into invasive cancer, so every instance is treated as if it is potentially life-threatening. That needs to change, according to Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. Esserman is campaigning to rename D.C.I.S. by removing its big “C” in an attempt to put it in perspective and tamp down women’s fear. “D.C.I.S. is not cancer,” she explained. “It’s a risk factor. For many D.C.I.S. lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old. We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?”

Such a decision doesn’t come without serious reflection, nor would I characterize it as an easy one by any means.  I have been spared from making a decision such a this, but my friend Crystal–along with countless other women–has had to face this diagnosis, weigh her options, and make decisions with which she was comfortable.  Some have opted for amputation, others have not.  Even though all of these women were faced with perhaps the hardest decision they will ever have to make, I am astounded by the increasing number of these amputations.  It’s the 21st century and this is all that medicine has to offer?

I’ve already addressed the social and gender aspects to prophylactic amputation to some degree in my post Language.  I can “get” that breasts aren’t vital organs and we can lead productive and fulfilling lives without them–often after having children, but so are testicles.  I don’t see men getting those bad boys lobbed off after they’ve had their families to diffuse any testicular cancer threat.  I wonder how quickly Lance Armstrong ran to the doc to get that second ball removed.  Heaven forbid!

At present I am reading The Breast Cancer Wars: Fear, Hope, and the Pursuit of a Cure in Twentieth-Century America by Barron Lerner, MD (New York: Oxford University Press, 2001.  Kindle edition.).  Dense but well researched, I found myself sucked in to the careers of William Halstead and a handful of preeminent surgeons who carried his surgical legacy over the course of a century and more.  Lerner argues that attitudes toward women’s bodies were driven by patriarchal prejudice that devalued breasts in aging women such that when a woman had finished bearing children and showed no further interest in sex (because we know that all women die inside when they turn 40), surgeons saw no reason to preserve the breast.  Fold this into how the surgeon focuses on the craft of surgery separate from the individual (if they dealt with the patient at all) along with a patient culture of “doctor-knows-best,” and you wind up with the general assumption that the breast was “nonvital and functionless” and considered “a superficial easily disposable appendage.” (Loc 1090).  In 1952, two Chicago physicians Richard Renneker and Max Cutler, noted that “[Her breasts] have served their purpose and she is now ready to accept their retirement.”

Retired breasts.  I can see them lounging on a beach in Bermuda with a cocktail as I write this.  Lathered in sunscreen.  A little sunhat on the nip.

> “Did you have a mastectomy, Madge?”
<  “Oh no, Betty, I retired my breasts.  I think they’ve seen better days.”
>  “O-kay . . .”

CaptureWith regard to the radical mastectomy first introduced by William Halstead and modified in its various forms as part of his surgical legacy, Lerner argues that the authority of the surgical profession largely framed breast cancer from diagnosis to treatment.  But society’s gender inequities both made possible and perpetuated increasingly radical forms of surgery to “cure” breast cancer.  “Because male-dominated society devalued the breasts of aging women,” writes Lerner, “surgeons viewed these organs as particularly expendable.”

This was the 1950s, and even then a new generation of surgeons began to slowly question the need for such radical surgery.  The introduction of biometrics and clinical trials (both of which were forcefully resisted at first), and the women’s movement would slowly change this surgical paradigm.  But despite this evolution it seems that we have come full circle.  Orenstein observes that with the pink movement having heightened awareness and–by extension–fear, many women are amputating their breasts when it is not clear that they really need to do so.

Of course many blogs are abuzz about Angelina Jolie’s decision to undergo a prophylactic bilateral mastectomy because she carries the BRCA1 faulty gene.  Many individuals who have commented on this story whether on blogs, Facebook pages, or the New York Times article directly mention–in what appears to be a sense of palpable relief that their breasts are gone–are comments such as “So what do we need ’em for?”  or “I’ve had my kids, I don’t need them anymore” or “I’m older now I really don’t need them”.  I understand that for some this may be a coping mechanism–say “good riddance” enough and you will come to believe it.  Are our breasts this expendable that we can speak to their value in such a perfunctory manner?  Few women seem to stand up and defend their breasts the way activists did some thirty years ago.

Nicole, the woman behind the My Fabulous Boobies blog and Facebook page, always says something that makes me stop and think.  “To me… it is not just a breast,” Nicole writes. “It [amputation] very much had a lot to do with my sexual experience as well as my body image and self-esteem.”  Think about it: breasts are pretty damned central to our sexual experience.  Lovers love to fondle, kiss, squeeze, and caress the breast.  And I, for one, like them fondled, kissed, squeezed, and caressed.  But hardly anyone raises this profound reality, choosing instead to focus on age and breastfeeding.  Nicole goes on to say “I believe that if similar options were all that men were limited to… take off an inch of your penis (for example)… we would be considering other options for whatever disease was affecting it. While I’m fine with my breasts now… I do think that it is barbaric that part of the cure or treatment for this disease requires amputating breasts.”

Word.

Orenstein, too, wondered about the willingness of so many to choose amputation as a preventive measure.  How is it that women were aggressively fighting to keep their breasts only three decades ago and now they are aggressively fighting to remove them?  For many, this answer can be found in the culture that not only frames the disease but the way in which it is treated.  Having detailed a woman with D.C.I.S. who would likely not develop cancer but opted for a prophylactic mastectomy anyway, Orenstein asks

Should this woman be hailed as a survivor or held up as a cautionary tale? Was she empowered by awareness or victimized by it? The fear of cancer is legitimate: how we manage that fear, I realized — our responses to it, our emotions around it — can be manipulated, packaged, marketed and sold, sometimes by the very forces that claim to support us. That can color everything from our perceptions of screening to our understanding of personal risk to our choices in treatment.

This is why Orenstein’s piece is, in my opinion, so profoundly transformative.  This is the kind of informed and intelligent conversation we should be having now and always.  Every day thousands of individuals are changed in profound ways as a result of the scourge of breast cancer; this level of horror cannot be left to be defined by a pink movement that devotes most of its resources on “prevention” and early diagnosis in lieu of a cure.  (I’m not saying this isn’t important, but we need to fund research.)

My remarks are in no way a judgment of the women confronted by circumstances that require them to make these profound decisions–far from it.  But unless we have these conversations–the ones that make us cringe, that make us cry, or the ones that make us angry–we lose the opportunity to move forward.  That we are where we are today is in no small measure the result of patients, physicians, clinicians, and advocates who, in the past, questioned the status quo and asked a simple question: “Why?”

When you refuse to engage in a conversation that compels you to question your assumptions or to be open to a change in opinion, you make a decision.  It is a conscious decision to remain shallow and intellectually obtuse.  In the case of breast cancer, you must place your own self-interests above something that is much larger than you.

Among the hundreds of individuals who left comments on Orenstein’s article was Nancy G. Brinker™.  She described this conversation as a “distraction.”

More on that next time.

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35 Responses to Harmonic Convergence

  1. Elizabeth says:

    Without my boobs-as humble but perky-as they are I would feel less of a woman And this is not superficial petty thinking Like Nicole said I love them to be touched and fondled Sexy stimulation is very important to intimacy
    Often think that if God forbid had breast cancer would not seek either surgery,radiatin,chemo or other Medieval methods .Not being flippant but would rather die intact
    Everyone has to make their own informed decision but refuse to go Breastless into the quiet night
    Also there are a few politicians out there who have no Balls so lets petition to have them chopped off
    Take care Scorchy
    Elizabeth

    • Scorchy says:

      It’s got to be a gut wrenching decision. Even though I am stage iv, I have been spared in that I haven’t had to ever contemplate the removal of my one or both of my breasts. I actually feel as if I’ got off easy. We need a cure for this dreaded disease, man. We just need a cure.

      As for the balls–I’m with you on that one!! Thanks for reading The Boob, Elizabeth, and for taking the time to comment.

      • dglassme says:

        This is a comment that has lingered with me since reading it earlier today. I could not disagree more, sorry Scorchy I’m pushing back on this one. You my dear did not get off easy, on the contrary. Enough said.

      • Scorchy says:

        Yeah. I know. xoxo

  2. An excellent post! Ever since my breast amputation, I’ve been saying that the most optimistic part of the increase in frequency of testicular cancer, is that now, better methods will be found.
    It’s not only the paternal “non vital and functionless” attitude we are dealing with, today it is also the Plastic-Surgery-fits and -fix-all approach, that we have to respond to.

    • Scorchy says:

      You are absolutely right. In this plastic surgery augmented world there is the idea that plastic surgery will fix all–and even make it better than it was before. So glad you stopped by to read The Boob. xoxo

  3. Reblogged this on cancerinmythirties and commented:
    A really important read…

  4. “Word” is right! So well written. And such an informative post.
    I was grateful for Orenstein’s article — and I am appalled to hear Brinker’s comment.
    Thank you for such an important commentary. Reblogging this right now…

  5. I remember your Language post from earlier; before having read that I never even considered a mastectomy to be amputation. We so, so very much need better options. I remember when the doctor told me my breast was rotten – there really wasn’t much choice but to remove it. Though if had been a choice, an option, who knows how I would have proceeded? ~Catherine

  6. I have both ends of this topic within my immediate family. I was diagnosed with stage III IDC in 2006, and before I was finished with treatment in 2007, my younger sister was diagnosed with high grade DCIS. I had chemo x3, a lumpectomy and radiation. She had bilateral prophylactic amputation and reconstruction. In 2009 I was then diagnosed with Stage IV metastasis, and I don’t believe my choice of surgery type led to this. This is a whole can of worms that I really need to blog out (my feelings run high), but I just wanted to share that I have both of these situations within my own family. I don’t begrudge my sister not taking the wait-and-see route, after seeing our mother and me both go through cancer treatment. I do begrudge her acting like she “had cancer” and is now a “survivor”.

    Great writing, Scorchy. Keep that conversation going, right?

    • Scorchy says:

      The whole issue of “survivorship” is complicated, isn’t it? What do we survive? Testing, surgery or surgeries, chemotherapy, radiation–in one or perhaps many combinations. But the cancer? We’re celebrating remission–no evidence of disease, they call it..

      Funny how women are so quick to grab on to that survivor badge. Pinkwashing is pretty insidious.

  7. Susan says:

    Scorchy this is so well written and makes so many great points. I love that you brought Peggy Orenstein’s article up and the quote about the woman’s choice with DCIS. I really appreciate the way you look at this from so many angles and it’s so refreshing to hear your thoughts and comments. Your points about amputation and the differences with the men and their balls in to the conversation and still reminded us of the important case happening in the Supreme Court with Myriad and our genes. I read, I laugh, I feel sad, and I delight in your wonderful way of putting all this information in to such a logical perspective. Simply brilliant! Thank you!

    • Scorchy says:

      Thanks so much, Susan. This topic has so many facets—the landscapes changes so profoundly when you look at each of these things individually. But when taken together it’s crazy interesting, isn’t it?

      I really love Peggy Orenstein’s article. This is the kind of information that will sustain me in a few months when the pink starts to creep in on us all. Ugh!

      xoxoxoxoxoxo

  8. Chandra says:

    Deeply thoughtful and thought-provoking. Word!

  9. Reblogged this on anotheronewiththecancer and commented:
    If you didn’t grow up in the city, maybe you spent time outdoors. Maybe you turned over logs to reveal all the icky bug and wormy things that lived under it. Kinda like how we have to upturn the pink crap and observe the icky things that make cancer conversations uncomfortable.

  10. Brinker commenting on Orenstein. Egads, that woman is vile.

  11. We need better options. Excellent post.

  12. As always your wonderful post raises many thoughts in my scrambled mind. Is it weird they call it Komen for the Cure, yet focus on as you say prevention and early diagnosis? And do they really focus on prevention, because it does not seem that way to me. If breast cancer could definitively be prevented, less of us would have it, yet here we are, year after year still getting that diagnosis, so I’d say that part of the focus is a failure. And what of that big kahuna of prevention, the mastectomy? One of the many things that irks me about the BRCA testing (I’ve blathered on about it enough on my blog) is that the primary prevention method offered is one of the treatments (the other big offer is not prevention, just more monitoring for early detection, not the same as prevention). Shouldn’t one of the perks of prevention be avoiding the horrible treatments involved in cancer? Just sayin’. But I get why women do it, even those without the mutation, I wrote about that too. Seems to me the real focus is only early detection because it is the only tangible offered. The chants of get your mammogram and get your BRCA tests, over and over, make it seem like progress is being made, it fools us into thinking we are “doing something”.
    Oh and as if there were not enough reasons to oust Brinker, that last comment should be the proverbial straw on the camel’s back. Komen and their sloganeering, their ribbons, their races and walks for the salary, whoops, I mean cure, are the real distraction.

    • Scorchy says:

      “Komen and their sloganeering, their ribbons, their races and walks for the salary, whoops, I mean cure, are the real distraction.” AMEN, SISTAH! A-FREAKING-MEN!

  13. Crystal says:

    I think it is important to realize that just as with IDC all DCIS is not created equal. There are different grades, tumor size and cell necrosis within this diagnosis just as with invasive breast cancer. All these things should be considerations In treatment options. An excellent surgeon will present all the options and give a patient time for an informed choice. I do get rather annoyed that in the breast cancer community we have a hierarchy of sorts. It only seeks to divide us when we need to come together. It is an ugly group of diseases that pits those with varying stages and grades against each other. I hate that.

    While I made the decision to have a BMX, it was not made lightly, nor without much research and thought. My left breast reavealed a messy case of DCIS with comedo necrosis, that was multifocal and grade 3 or high grade. Was it excessive to have the healthy breast removed? Probably, but my decision was made based not just on risk, but also on symmetry and vanity reasons because my breasts and outer appearance are important to me. I will admit that. Of course I have been chastised for this decision, too. No matter what, someone always has a personal opinion about your breast cancer treatment decision. Do we question a person with other forms of cancer about their treatment choices? Are we so quick to judge someone with colon cancer or melanoma? What is it about breast cancer that seems to invite others’ very vocal opinions, disapproval and second guessing of our treatment choices? Why am I made to feel I have to justify my personal health decision? It’s a very interesting thing to think about, don’t you think?

    • Scorchy says:

      I’m so glad you weighed in on this, Crystal. I am struck by how this whole breast cancer “movement” puts the onus on the woman at all times. Got breast cancer? Well, you didn’t eat well enough, exercise enough, drink out of the right container, used the wrong cleaning products, lived in the right area, maintain your ideal body weight, blah, blah, blah. And, as you say, people on the outside Monday morning quarterback the treatment decisions. And not just silently–but to your face! It’s like you can’t win: you’re either the cause of your cancer or you didn’t treat it correctly.

      I don’t think any woman makes these decisions lightly–I sure know you did a lot of research. And please keep in mind that I am commenting on the big picture, not taking any woman to task for her decision. I am angry that the treatment choices in 2013 are so limited. And, not only that, but there aren’t better diagnostic methods to determine which DCIS is a real time bomb or what DCIS can be left alone without fear of its leaving the duct.

      This is why I think Peggy Orenstein’s article is so important. Let us, as a society–as a global village–lift our heads above the pink cloud and start thinking straight.

      Love you, girl. xoxoxoxo

  14. As always, your point is well written. Although not your line, the analogy of the “removal of one inch of penis to cure some male issue” is a mindset that more doctors should consider. And another thing that hit me while reading your words: the cancer thing has been around for a long long time. Quotes from 1950, for example. I was wondering how long other deseases came and went from discovery to cure. Cancer seems like we are well past the ninth inning.

  15. helensamia says:

    It is very sad to think that women feel that there only choice to avoid cancer is to amputate their breasts.. I cant imagine what it is like to make that decision but it is huge and life changing.. Lets hope in the future there are other options and that a cure is found.. We can but hope.

    • Scorchy says:

      But it isn’t the women who are “responsible” for this choice. Indeed, if there even is a choice. I do hope that research results in more choices and not so drastic ones. Right now it’s all we have and that is crazy, right?

      • dglassme says:

        Yes, it’s crazy!! As I frantically work to unravel this deep sea of “cautionary tales” during the last year, in an effort to determine potential pitfalls.

      • Crystal says:

        Sadly, Scorchy it is a choice of that (for advanced DCIS) or wait a few years until it turns into IDC and hope you caught it in time. What kind of choice is that? You’re right in saying it is not really a choice.

      • Scorchy says:

        You’re absolutely right. No choice indeed.

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