Live from the Lilith Blog

December 22, 2010 by

Strangled by a Pink Ribbon Or: Breast Reconstruction Surgery 101

I do not have cancer. Or if I do, it’s still worming its weaselly way to the surface of my life. Like most people, I have relatives who have had various incarnations of the disease, some who have died of it. I was recently counseled by my doctor that given my family history, I should be tested for the BRCA1 and 2 genes. It has been on the back burner for several months now, a chore I know needs tending to, but one I’m loath to address. Because knowing that I am a carrier would leave me with the awful question of: what now? If I test positive, the good news is that my insurance will pay for a prophylactic mastectomy. And then, I’m entitled to a brand-new pair.

I am not particularly attached (other than at the literal, fleshy level) to these pointy little orbs on my chest. I am a scant A-cup. I really only wear a bra because of nipple decorum. I don’t “need the support” like some women, my pecs hold them up just fine. And though they fed my son, and still nourish my sexuality, I don’t think I would miss them terribly if they fell off altogether in the shower one day. This is how I feel today, on the front end of my childbearing years. But my maternal grandmother was diagnosed in her late thirties; do I really have the time to put this off? Do I have the luxury of being flippant? And as Jewish women, do you? If you carry the gene, you have an 85% chance of developing breast cancer and 60% of developing ovarian cancer by 70. A 2009 study noted that Ashkenazi women are 20 times more likely to be carriers of the gene than the non-Jewish population.  There is some concern about genetic counseling being used to stigmatize Jews, but most simply take the statistic as strong caution to be vigilant. I might set aside my concerns over racial profiling if it could keep me alive (but I digress).

I recently took a teacher training program to learn to teach yoga to cancer survivors (if you are so inclined, this is the one to take, IMHO). Tari devoted a large portion of the program to the challenges posed by the “reconstructive surgery” process. It turns out that, in an effort to return women to “femininity” and “normalcy” (not my words), we end up limiting their range of motion.

So how do you rebuild a breast?

You have a couple of basic options: implants, or self-harvested reconstruction. The word “harvest” has positive connotations, it conjures up notions of bountiful soil, spilling over and nourishing the farmer. Yum, who doesn’t like a nice harvest? And implants, well, celebrities get those, don’t they?

1) Implants. A two step procedure. First: insert expanders. Allow these to stretch, pull and separate the pectoral muscle away from the chest wall [note: this will be painful, at times excruciating, and may also induce your body to form life-long scar tissue]. These muscles will now hold up your implants. Assuming your body does not reject them outright [note: not entirely uncommon], and setting aside the potential for auto-immune reactions, you will certainly have to have these replaced multiple times over the course of your remaining years. This is high-maintenance healing.

2) Self-harvested: there are multiple variants on this form of reconstructive surgery. The most common is the TRAM flap surgery. Here, the doctor will detach the transverse rectus abdominus from its point of origin and tunnel it up to the chest area, here he/she will shape the muscle into a breast, possibly supplementing with an implant. Now that you no longer have a transverse abdominus, you may need to have a mesh sown in place to keep your insides from herniating outward. Luckily, this procedure also entitles you to a tummy tuck. You won’t have abs to properly support your organs or spine, but your stomach will be nice and flat. Whatever functional scoliosis develops as a result of this procedure may be unavoidable, but you will look great as you hunch into your latter years.

The DIEP Flap allows for the formation of a breast using your own tissue, and spares the muscles form the site where your tissue is harvested.

Sorting through these options is overwhelming to even a healthy woman. So, imagine the thought processes of a woman who has just emerged from the hell of cancer treatment. Imagine the allure of “normalcy” as it is now being sold to her by her surgeons. Note the language: “Breast reconstruction is a physically and emotionally rewarding procedure for a woman who has lost a breast due to cancer or other condition.” Explain to me how this can be physically rewarding, given that there is no sensation in the tissue? The nerves are severed. There is no medical benefit or need for reconstruction, it is purely cosmetic. Are they referring to a sexual partner’s physical “reward”? And as for the dubious emotional reward: if we accepted that women actually come in different shapes and sizes, and that that shape and size will change as we age, might the need for this paltry reward disappear?

The poet Audre Lorde had cancer, and a mastectomy, and refused either reconstruction or prosthesis.   She addressed the question best in her The Cancer Journals: “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.”

–Liz Lawler

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  • Roberta Schloss

    I am a BRCA1 positive breast cancer survivor who had an elective double mastectomy and oophorectomy, followed by the TRAM procedure. I, too, was not overly attached to my breasts & it was a no brainer for me to have the double mastecomy. When I found out that I was BRCA1 positive, it was much more devastating than I expected. Despite feeling like I was run over by a truck, I do not regret knowing my BRCA status because I can make informed decisions. My 24 year old son also tested BRCA1 positive, and he and I do not regret the decision for him to be tested-he will be vigilant throughout his life for the early detection of breast & prostate cancer. Most of the time I do not regret the TRAM, although the recovery is hell. Sometimes I wish I did not have any reconstruction, but I think it would make me feel badly to have a sunken chest. The TRAM helps me feel like I look normal, which helps me not focus on my cancer or BRCA status..but it is true that not only do I have no feeling in my breasts, I have a constant numb feeling on my chest. All of the decisions I have made regarding my breasts makes me feel that I have power to determine what happens to my body. Good luck to anyone faced with these decisions.

  • Lizlawer

    Hi Roberta,
    Thanks so much for your comment! So great to hear from someone who has been there. It really means a lot to have dialogue with women who have made informed decisions. It is also really interesting and vital to remember that men, such as your son, (and possibly mine) are included in this discussion. Thanks for that note, and peace during this stormy season. -Liz.

  • David Greenspun

    I appreciate the frustration that you and women facing mastectomy for the treatment of breast cancer, or as a prophylactic measure, often experience. The options for reconstruction are many—each with its own imperfections. Sorting through these options can certainly be “overwhelming,” and having a good idea of the factual information about breast reconstruction can be helpful to women facing the physical and emotional challenges that come part-and-parcel with mastectomy.

    Several elegant studies show that women who undergo reconstruction have significant psychological benefit following the procedure in measures such as overall quality of life and sexual fulfillment. The results of the Michigan Breast Reconstruction Outcomes Study—one of the more widely cited studies on this topic—are summarized on the University of Michigan’s website (http://surgery.med.umich.edu/plastic/patient/breast/mbros/studyresults.shtml). Just this month, the journal, Plastic and Reconstructive Surgery (http://journals.lww.com/plasreconsurg/Fulltext/2011/01000/Quality_of_Life_of_Patients_Who_Undergo_Breast.3.aspx) published a study that also shows that women who undergo reconstruction after mastectomy report a higher quality of life than women who forgo reconstruction. Nevertheless, reconstruction is still not appealing to everyone.

    Also, if the yardstick suggested in your post for determining what constitutes cosmetic surgery—as opposed to reconstructive surgery—was applied broadly, surgery to repair a cleft lip, craniofacial surgery to re-form the skulls of children born with certain syndromes, or with craniosynostosis (where there is extreme skull deformity but no functional impairment), and reconstruction of many burn injuries where appearance is affected in the absence of functional abnormality, would all be considered “cosmetic.” Medical professionals generally distinguish between cosmetic surgery and reconstructive surgery based on whether the surgery is being done to improve upon normal appearance or to correct the abnormal; cosmetic surgery seeks to improve upon the normal while reconstructive surgery seeks to normalize the abnormal. In fact, the Women’s Health and Cancer Rights Act of 1998 contains important protections for women who wish to have breast reconstruction after mastectomy. This Federal law requires group health plans and individual health policies that provide coverage for mastectomies to also provide coverage for breast reconstruction.

    Not all breast reconstruction leaves women without sensation, or with “numbness.” Procedures that connect nerves in the tissue used for reconstruction to nerves at a women’s chest can facilitate, to some degree, the return of sensation to a reconstructed breast –for instance with the DIEP flap you mention as an option for breast reconstruction, which “spares the muscles from the site where your tissue is harvested.” For this reason, the DIEP and other flaps that do not destroy or move muscle—collectively known as perforator flaps—are appealing to many women who want to reconstruct a breast but are unwilling to accept an implant or the negative consequences of destroying muscle. Not surprisingly, perforator flaps (as opposed to muscle-containing flaps like the TRAM) are especially appealing to women who lead active lives and are replacing muscle-containing flaps as the gold standard for reconstruction with “self-harvested” tissue.

    It’s my impression that breast cancer has emerged from a silent topic into the spotlight. I just did a quick Google search and found a New York Times story that reviewed the National Cancer Institute’s funding data for 2006: “Among the big cancers, breast cancer receives the most funding per new case, $2,596—and by far the most money relative to each death, $13,452.” I think that this funding allocation is a testament to the voices of breast cancer patients, survivors and advocacy groups that are, thankfully, anything but silent.

    David T. Greenspun, M.D., M.Sc.
    Diplomate, American Board of Plastic Surgery
    Specialist in Breast Reconstruction
    http://www.davidgreenspunmd.com

  • Lizlawler

    Hi David,
    Thanks so much for chiming in! Great to have a thorough and measured statement from a surgeon. You are right, we have come a really long way, partly thanks to advancements in reconstructive technologies (DEIP flaps, etc).
    The only two little qualms or questions that I might have with your comments are these:
    These studies that you cite clearly show that women like have normal looking breasts. But of course they do–we live in a world that has a specific image of what a woman should look like. So clearly, if they fit that mold, this will translate to greater ease and self-confidence, better “quality of life” and “sexual fulfillment” (which probably has a lot to do with feeling fully accepted by your partner).

    Also, I would not lump reconstructive breast surgery in with repairing cleft palates, etc. But really only because the examples you cite are extremely obvious to an outside observer, facial deformities are much more visually arresting than a flat chest (for which you can wear “falsies” without anyone really knowing the difference, should you so choose). A child will not stop and point at a woman with a flat chest, but may do so to someone with a marked cranial deformity. So, I would not actually apply this yardstick broadly, but more selectively.

    It is a nuanced discussion, and thanks again for contributing!