In the era of biocitizenry—when how you manage your medical risk is part and parcel of good citizenship—identity is a crucial mediator. Who you are is who you are like, and who you are like is whose narrative you can slip into: celebrity greases the deal. Whether that narrative is a comfortable glove that fits you just right, or a bus you jump on in a hurry, only to realize later that it took you just where you needed to go—or in the opposite direction—may be both a metaphysical question, and one with real consequences.

Angelina Jolie’s revelation in the NY Times of her carrier status for the BRCA mutation and of her choice of prophylactic double mastectomy was well-measured. She highlighted several important facts that frame the diversity of people’s experience and choices to set a context for her own moving personal narrative, such as that the BRCA gene mutation is responsible for a small share of breast cancers, that access to the test is hindered by its cost (Myriad’s patent as the most significant driver of that cost went unnamed), that the biggest disease burden is borne in lower-income countries, that the choice of approaches to prevention is personal and best discussed with your physician. Her physician blogged the treatment regime, but only after the news cycle and blogosphere were forced to content themselves for a day with the policy issues of patents (read Leila Jamal at The Berman Institute’s Bioethics Bulletin on the Myriad patents and the case before the Supreme Court), access (read s.e. smith’s harrowing account at xojane of knowing her BRCA status but being unable to afford preventive treatment), and what may have been the source of her self-reported 87% lifetime risk of breast cancer (Tiffany O’Callaghan interviewing Allison Kurian at The New Scientist), as well as the misogyny flung Jolie’s way (you may want to skip the tumblrs filling with variants of the “poor Brad” meme from twitter).

Most women choosing double mastectomy as a prophylaxis for breast cancer are not women with the BRCA mutation. If there were a sweepstakes for bravery, Jolie’s worthy competitor would be Peggy Orenstein, who wrote two weeks ago in the NY Times Magazine about how her advocacy for early detection via mammography screening was transformed as she came to understand the depth and extent of breast cancer overdiagnosis. The issue of overdiagnosis, to be clear, isn’t about the distress and uncertainty that comes with false positives. It’s about unnecessary medical treatment: surgery, radiation, and chemotherapy for breast cancers that would never have killed if left alone. The recent Canadian Task Force on Preventive Health Care update of the similar US body’s guidelines quantifies overdiagnosis for women undergoing screening in their 40s as 10 cancers treated unnecessarily for every life saved. Jolie faces visceral misogyny from her so-called fan base; Orenstein faces the ire of the screening advocates. I’m not sure which is worse.

Orenstein writes about the many women choosing prophylactic double mastectomy now who are doing so not with a BRCA mutation and the support of good medical evidence for their choice, but against the evidence and the advice of their physicians.

She writes about women with cancer in one breast and an “exaggerated” perception of the risk of cancer in the second. Labelling a fear “exaggerated” is dangerous territory. How should we talk about the way that women with experience of breast cancer in sisters and mothers and friends—and in their own history—“know better” than women who do not what it is they are trying to avoid—while at the same time they may state that they believe their level of risk for cancer in the second breast to be six times higher than it actually is? This is the question Orenstein faced: weighing dry statistics against the reality of the cancer she was having surgically treated, she made the choice against a double mastectomy.

She problematizes the “previvor” narrative by describing women with a positive mammography screen results but ultimately diagnosed with Ductal Carcinoma in Situ–a condition rarely identified before the screening era, and one that some say we should call a “risk factor” for cancer rather than a “carcinoma” itself. She describes women whose breast tissue or luck of the draw have given them mammography results leading to repeat biopsies or, worse, surgeries and chemo or radiation therapy for “minor” tumors, and who then have limited treatment options when a truly aggressive tumor comes along, or who simply tire of the repeat investigations and treatments.

Decades after women first questioned the “battle” metaphor, what shapes today’s epidemic of overtreatment is something even more subtle and pervasive than metaphor: it’s narrative and identity. Good breast cancer citizens (and that means good women) are pro-active. They are brave, particularly in the face of invasive and transforming surgeries. Fear, pain, the disruption of life options and plans, other complications, are managed emotionally and practically via the readily available identity of survivor (and “previvor”), while crowds cheer you on.

This bus takes you to satisfaction with your choice of a double mastectomy whether you had any substantial risk related to the tissue you have removed or not. The question of whether your treatment was in fact an unnecessary excision of healthy tissue, with the risks of hospital complications and possible sequelae of chronic post-mastectomy pain syndrome, can’t be answered. The narrative affirms that you did right by doing everything in your power to avoid cancer.

A key element in decisional satisfaction or regret in every BRCA mutation preventive mastectomy story I’ve read this week is process of reflection on one’s children—am I straining the metaphor if I label it a safety rail with which this particular bus is very well-equipped?
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Jolie writes:

I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.

Allison Gilbert writing about her similar choice on the CNN website last year put it in the most blunt terms–the headline was this:

 My preventive mastectomy: Staying alive for my kids

Uncharacteristically for a headline, that’s actually a mild version of what the author herself wrote:

I’m not a helicopter parent and my children would tell you I don’t bake cupcakes for their birthday parties. But I’d readily cut off my breasts for them — and recently, I did.

Orenstein weighed her children in making her decision:

I weighed the options as my hospital date approached. Average risk, after all, is not zero. Could I live with that? Part of me still wanted to extinguish all threat. I have a 9-year-old daughter; I would do anything — I need to do everything — to keep from dying. Yet, if death was the issue, the greatest danger wasn’t my other breast. It is that, despite treatment and a good prognosis, the cancer I’ve already had has metastasized. Preventive mastectomy wouldn’t change that; nor would it entirely eliminate the possibility of new disease, because there’s always some tissue left behind.

Amy Harmon revisited this week her NY Times “previvor” profilee of 2007, Deborah Lindner. Lindner reports:

This was absolutely the right decision for me…I don’t ever have to look at my babies and worry that they won’t have a mother because of breast cancer, because my risk is so much lower than anyone walking down the street right now…

Oft-quoted estimates that lesbian women face double to triple the risk of breast cancer that straight women do may not stand up to scrutiny (Cochran et al. Am J Public Health. 2001;91:591–597; Bryn Austin et al. Cancer Epidemiol Biomarkers Prev December 2012 21; 2201): the elevated risk for lesbian and bisexual women, if it exists, may be small. If lesbian women are more likely to drink and less likely to give birth—both risk factors—they are also less likely to be screened, which may save us the overdiagnosis discussed above. But differences in post-treatment health and in satisfaction with treatment are evident in an increasingly rich literature (e.g. Boehmer et al. Cancer 2012, 117: 3796–3804).

While nulliparity—never having given birth—is a substantial biological risk factor for breast cancer, and more prevalent among lesbian women than among straight, might the available narratives and identities turn it into a risk factor for undertreatment for some of us?

That emerging literature on treatment experiences and outcomes for lesbian and bisexual women documents under-insurance, social isolation, and  homophobia both internalized and robustly externalized by healthcare providers, and the impact these factors have on access and satisfaction with medical treatment.

The prevalence of “nulliparous” status for lesbian women may recede as marriage and childbearing become as “homonormative” as they have been heternormative. But as the world slowly and haltingly transforms so that we may share the narrative of marriage and childrearing with straight women, what about the single and childless among us—whatever identity or orientation? What guides their choices and secures decisional satisfaction? Is the reflection on one’s children simply a socially-sanctioned manner of expressing a decision one has made for oneself? (Has a man choosing aggressive treatment for early prostate cancer ever written, and been praised for writing bravely, that he is cutting off his testicles for his children?) Or is society’s devaluation of the single state so internalized that women weigh saving their own lives as worth less to them if they have no children through whose eyes they see themselves?