Recent Articles

March, 2014
Beauty Self-Acceptance--At Last
MORE Magazine

September, 2013
Call of the Wild
MORE Magazine

September 1, 2013
Grieving Traditions Lost In Berkeley Camp Flames
The San Francisco Chronicle

May 15, 2013
Reacting to Angelina Jolie's Breast Cancer News
The New York Times Magazine: "The 6th Floor"

April 25, 2013
Our Feel-Good War On Breast Cancer
The New York Times Magazine

July 15, 2012
They Don't Make Feminists This Outrageous Any More
Slate/DoubleX

June 11, 2012
Too Young for Status Updates
The Los Angeles Times

April 10, 2012
Improved Breast Cancer Detection Needed
The San Francisco Chronicle

February 15, 2012
Beyond the Komen Controversy
The Los Angeles Times

more articles >

My Daughter’s Grrrilla Tactics: #Unapologetic

The Barbie Sports Illustrated Swimsuit Issue cover got all the buzz, but  it was nowhere to be found yesterday at our local book store. Instead, this cover caught my 10-year-old’s eye:

swimsuit issue

“Ick!” My daughter said. “What does that have to do with sports, Mom?”

“Absolutely nothing,” I responded.

She  glanced at the next magazine over,  also Sports Illustrated, with this cover of Mikaela Shiffrin looking very real and really happy with her incredible accomplishments.

shiffrin

My daughter looked back and forth for a moment, then grabbed the  Shiffrin cover and put it on top of the swimsuit issue, blocking it from view.

“There,” she said, satisfied, and walked away.

Yes. That’s my grrrl.

What Do Little Girls Really Learn from “Career” Barbies?

Like a lot of moms, I faced the Barbie dilemma when my daughter was younger. I solved it–ta da!–through hypocrisy and mixed messages. Ok, maybe that’s a little harsh. But I  figured a little bit of Barbie would sate her appetite (and stop the nagging) without doing too much harm. Like a vaccination, or homeopathic innoculation against the Big Bad. I told myself my daughter didn’t use her dolls for fashion play anyway: her Barbie “funeral,” for instance, was a tour de force of childhood imagination. I told myself I only got her “good” Barbies: ethnic Barbies, Wonder Woman Barbie, Cleopatra Barbie. Now that she’s 10 and long ago gave the dolls away (or “mummified” them and buried them in the back yard in a “time capsule”), I can’t say whether they’ll have any latent impact on her body image or self-perception. It would seem ludicrous, at any rate, to try to pinpoint the impact of one toy. To me it was never about a single product anyway–not even the Princesses, though I’m often accused of thinking that–it was about the accrual of products, the conveyor belt we put girls on at ever-younger ages that tells them that how they look, first and foremost, is who they are.

But now, according to a study published this week,  it turns out that playing with Barbie, even career Barbie, may indeed limit girls’ perception of their own future choices. Psychologists at Oregon State and the University of Santa Cruz randomly assigned girls ages 4-7 to play with one of three dolls. Two were Barbies: a fashion Barbie (in a dress and high heels);

Barbie fashion

and a “career” Barbie with a doctor’s coat and stethoscope.

doctor barbie

 The third, “control” doll was a Mrs. Potato Head, who,  although she comes with fashion accessories such as a purse and shoes, doesn’t have Barbie’s sexualized (and totally unrealistic) curves.

potato head

 

 (NOTE: I just pulled these images from the web: I don’t know which Barbies or Potato Heads they used. Interestingly, though, the doctor Barbie I found on Amazon costs $35 whereas the fashionista Barbies are $11-$15. And one more note: I’m from the era when we used actual POTATOES for our Potato Head dolls, sticking them with push-pin pieces on which you could easily impale yourself–or your sibling. Those were the days, eh? Anyway, back to the topic at hand…).

Ahem. So, after just a few minutes of play, the girls were asked if they could do any of 10 occupations when they grew up. They were also asked if boys could do those jobs. Half of the careers, according to the authors, were male-dominated and half were female dominated. The results:

Girls who played with Barbie thought they could do fewer jobs than boys could do. But girls who played with Mrs. Potato Head reported nearly the same number of possible careers for themselves and for boys.

More to the point:

There was no difference in results between girls who played with a Barbie wearing a dress and the career-focused, doctor version of the doll.

Obviously, the study is not definitive. Obviously, one doll isn’t going to make the critical difference in a young woman’s life blah blah blah. Still, it’s interesting that it doesn’t matter whether the girls played with fashion Barbie or doctor Barbie, the doll had the same effect and in only a few minutes. That reminded me of a study I wrote about in CAMD in which college women enrolled in an advanced calculus class were asked to watch a series of four, 30-second TV commercials. The first group watched four netural ads. The second group watched two neutral ads and two depicting stereotypes about women  (a girl enraptured by acne medicine; a woman drooling over a brownie mix). Afterward they completed a survey and—bing!—the group who’d seen the stereo- typed ads expressed less interest in math- and science-related careers than classmates who had watched only the neutral ones. Let me repeat: the effect was demonstrable after watching two ads. And guess who performed better on a math test, coeds who took it after being asked to try on a bathing suit or those who had been asked to try on a sweater? (Hint: the latter group; interestingly, male students showed no such disparity.)

Now think about the culture girls are exposed to over and over and over and over and over, whether in toys or movies or tv or music videos, in which regardless of what else you are—smart, athletic, kind, even feminist, even old—you must be “hot.” Perhaps, then, the issue is not “well, one doll can’t have that much of an impact,” so much as “if playing with one doll for a few minutes has that much impact what is the effect of the tsunami of sexualization that girls confront every day, year after year?”

(If Barbie were life-sized she’d be 6 feet tall with a 39″ bust, 18″ waist, and 33″ hips. This representation was made by then-high school student Galia Slayen and originally from a post by Today News)

Parenting in the Digital Age

I was just re-reading Catherine Steiner-Adair’s book, The Big Disconnect, and came across this passage:

Children come to life innocent, unaware of the harsh aspects of pain and suffering and how cruel people can be. Part of the job of parenting is to protect them from that harsh truth long enough for them to develop a sense of goodness and core values of optimism, trust, internal curiosity, and a hunger for learning. If they see too much too soon–before they’re neurologically and emotionally ready to process it–it can short-circuit that natural curiosity. Boys and girls alike are easily traumatized by premature exposure to the media-based adult culture that cultivates cynicism and cynical values, treats sex and violence as entertainment, routinely sexualizes perceptions of girls and women, and encourages aggression in boys.

As a parent, I was initially taken aback by how actively I’ve needed to protect my child’s childhood (and her creative imagination) from predatory marketers and crass media. I had no idea that would be such a challenge. If you haven’t seen Steiner-Adair’s book check it out. It has great thoughts on how to guide your kids through the digital wilderness (and, I’m warning you now, won’t let you off the hook about your own habits).  If her name sounds familiar, it’s because she’s also authored a path-breaking curriculum on  fostering health and leadership  among girls.  

140 Characters Isn’t Enough to Say I’m Sorry

So I am in the Twittersphere dog house and, it seems, justifiably so. It’s hard to respond in 140 chars (especially hundreds of times) so whether I dig myself in further here or adequately respond, at least I have a little space.

Here goes.

I was wrong, stupid and insensitive to not read Lisa Bonchek Adams herself before promoting Bill Keller’s editorial. The internet is often a reactive place, and although I try to resist that impulse, to think before I tweet, I messed up. I hit the send button without doing the research I should have based on something in his piece that did resonate quite strongly with me —the idea that the American medical establishment prioritizes quantity over quality of life in end-of-life care. I didn’t much think about the personal example being used to make that point, just assumed he was right (and you know what happens when you assume….).

Here was my thinking:

I am hyper-sensitive to the idea that cancer patients who don’t “do everything” are lesser than others. I have a dear friend who opted to stop treatment for metastatic disease. She faced pressure by her doctors. She faced pressure by her family (and yes, she had small children –she was in her 30s). People accused her of “giving up.” She was not seen as brave or heroic or self-determining. Years later I bumped into a mutual friend who still referred to  this woman as someone who “gave up the fight.” That rankled. So when I read a journalist saying we needed to think about our attitude regarding end-of-life care and “heroic measures,” it landed deeply with me.

Even not end-of-life care. I am supposed to be in treatment for my own disease for four more years. Or maybe 9 more years, if my doctors have their way. I will have to make a decision about that at some point. It makes my stomach sink to think about nine more years of crappy side effects. But when do you say when? How do I weigh survival benefit versus lifestyle benefit? I struggle mightily with this. I suspect that if I choose to say no to the treatment it will be a stigmatizing choice, explicable only to a few of those close to me. If I were later to be diagnosed with metastatic disease, would I be blamed? Would I blame myself?

Meanwhile, I am still feeling the sting of what Gayle Sulik called “heartfelt misinformation” spread by Amy Robach in the wake of her cancer diagnosis. I wish her well, of course I do. I mean obviously. Unfortunately—and I know this from personal experience, too–when you put yourself in the public eye as a cancer patient you no longer get a free pass. Gayle Sulik wrote beautifully about this: So I was, I guess, feeling easily triggered by anyone’s personal story that smacked of that.

Yet Lisa Adams’ does not. And none of the above is an excuse for not doing my own research to find out. she was not a good choice for a discussion of end-of-life care.  I apologize to her for thoughtlessly piling on. Again, I refer  to Gayle Sulik, who  wrote her own piece about the Keller-Adams controversy that says it all.  

Some have accused me of backing “team NY Times” in this debate because of my relationship there. Let me give you a little inside baseball: while we  have the amazing gift of prominence and audience for our work, we Magazine writers do not have much by way of internal status. We operate in a netherworld, our inclusion on “the team” situational, depending on whether we reflect well or poorly on the corporation. Nor do I know Bill Keller personally, at least I don’t recall ever meeting him (so please don’t tell me that I did in 1988 and just forgot). I do, however, know  his wife, Emma Gilbey Keller. We have met in person once, for about 30 seconds, but we are Twitter pals. After my recurrence, she emailed me to tell me she’d been through the surgery I was facing—the DIEP-flap reconstruction—and offered herself as  a resource. I knew no one who had gone through this so that was a Godsend. Emma was unstintingly generous with her time, sending me long emails, checking in on me when she didn’t hear from me, letting me know what to expect, guiding me through a deeply frightening and painful (physically and emotionally) process, boosting my morale and offering information. She even sent me a good luck blanket to take into the hospital, because she had so often been cold during the week in intensive care. All, as it turned out, while her father, with whom she was extremely close, was dying and she was recovering from her own cancer surgery. Again, we are essentially strangers–I blurbed a book of hers that I liked years ago, but we don’ t know each other. I am so grateful to her and always will be. So if anything colored my willingness to back Bill without question, it was my gratitude and loyalty to Emma. That means I will not add to the discussion and speculation about them in this space.

Again, that is not an excuse. I was wrong not to do my due diligence. And I apologize, again, to Lisa Adams, her followers as well as my own followers and readers for that. One of the unsettling parts of the internet is that you can’t take things back. I would have done this differently. It’s a lesson learned.

Just in Case

Just in case you stop by this blog and are wondering: Hey, Peggy, where you at? I am, for the moment, trying to stay offline as I report and frame a new book. Unless I pull way back from other forms of communication, I have a super hard time doing that. So I’ll be back at some point, when I’m further along. Meanwhile, thank you for your patience and on-going interest in my work! -Peggy

Whoa. Hell no. Neigh, My Little Pony!

I’m trying to stay off blogging and social media for awhile while I launch a new project (procrastination is just too tempting) so this will be brief. I don’t think there is much to say anyway except, whoa! Hell no! NEIGH to the evolution of my little pony!

 

 

Here’s Huffington Post on the new MLP, featuring a quote from me. I had a lot more to say, obviously, but what they quoted was certainly blunt.

My BRCA Story Testing-I Finally Read it, Maybe You’d Like to As Well

It’s taken me awhile to read the story I wrote in 2007 for MORE magazine on being tested for BRCA mutations. I find it difficult to go back and read anything I’ve written about cancer. It’s emotional, painful. Once a part of the journey is in the past I’d like to keep it there. But that’s not my destiny, I guess. So I went back and read the piece and  found I still stand by it, I still like it and I think it still has value, especially now, although at the time I didn’t know or understand about gene patenting.

I read a blog on “The Broad Side”  in which the writer said:

I’ve read pieces that call into question the science, hope that Jolie becomes a voice for breaking up the monopoly on the BRCA test itself and far more who fawn over Jolie’s courage. Yet, rare in the pages and pixels spilled over Jolie’s decision is any real framing of what it is to sit where she sat and make that decision.

I can’t really say whether that’s true-I haven’t read all the media. But if it is, for the record, I thought I’d reprint my piece here and you can see exactly what it feels like to go through testing. I’m not sure if, technically, I’m allowed to reprint a whole piece, even my own. But I hereby give myself permission because, heck, it’s MY PIECE (do I sound the like granddaughter, daughter and sister of a bunch of lawyers?). And then, really, I’ve got to sign off for awhile:

Put to the Test: The Breast Cancer Gene

A woman with breast cancer undergoes genetic testing to find out whether she carries a breast cancer gene

By Peggy Orenstein

Was My Breast Cancer Just a Fluke?

The thing I remember most about being told I had breast cancer was how the colors in my home office — where I’d been tidying up for the day, preparing to go to a movie with my husband — went flat. Isn’t that odd, I thought, looking down at my newly alien torso. My red shirt has turned gray. My red shirt has turned gray, and I might die.

That spectrum shift was the first sign that I’d passed through an invisible membrane into the parallel universe of the ill. I turned to my husband, Steven, who was standing in the doorway, listening in disbelief on the extension as the surgeon told us that I was a lucky woman, that the cancer was low-grade and slow growing, eminently treatable with a lumpectomy and six weeks of radiation. We stared at each other for a beat, as close and as distant as we had ever been. He reached his hand out, as if to keep me with him. “But I eat organic broccoli!” I wailed, and then began to cry.

That was January 1997, only six weeks past my thirty-fifth birthday. The odds of being diagnosed at that age were one in 233. A fluke. “Do you have a family history?” an acquaintance asked when I told her the news. I suppose it was a natural question, although fewer than a quarter of breast cancers are familial. But it struck me — along with the inevitable queries I’d field about whether I held in anger, had endured a trauma, or had been depressed — as a way for other women, under the guise of caring, to reassure themselves that they were safe. “No, I don’t,” I snapped. “No one in my family has had breast cancer. I’m just like you.”

As far as I knew, that was true.

A week later, I read an article in the paper about a blood test that could detect inherited mutations in the BRCA genes, BRCA1 and BRCA2. In most women the BRCA genes suppress tumor growth. In some families, however, the gene contains a flaw, passed along by either the mother or the father, that makes it do the opposite, predisposing its carriers to breast and ovarian cancer. About one in 800 people carry the BRCA1 mutation in the general public, but among Ashkenazi Jews — those whose ancestors emigrated from middle or Eastern Europe — the rate of mutations in either gene is closer to one in 40. I’m an Ashkenazi Jew. My aunt had died of ovarian cancer at 54. At the time, we thought that was a fluke too. Yet even as the thought, this could be me, entered my head, I rejected the idea. No one else in my extended family had been sick. Besides, I already knew my lifetime breast cancer risk: It was 100 percent.

There is a little bit of Vegas in predictive genetic testing, a roll of the statistical dice. Even if you found, let’s say, that you had an 80 percent risk for some disease, who’s to say you wouldn’t be in the other 20 percent? What if the known risk-reducing treatments come with risks of their own, the way tamoxifen, the widely used breast cancer drug, increases the risk of uterine cancer? Increasingly, all of us will be running the numbers and weighing the trade-offs on one scary condition or another — we all have skeletons lurking in our skeletons. In its zeal to find them, science has outpaced the medical, psychological, and ethical implications of its discoveries.

Cardiovascular disease. Diabetes. There will be gene tests for all of them and more, and each will bring with it the same questions: Who should be tested? What is the benefit of knowing you’re at risk, especially if, as with the degenerative and ultimately fatal Huntington’s disease, there is no cure available? What responsibility does a person who tests have to family members, including those who might not want to know the status? Should genetic testing be a factor in choosing whom you marry? Would some couples want to abort if their fetuses were found to have a tendency toward cancer? Mutations are not a guarantee of cancer, remember, and cancer is by no means a death sentence. Maybe there are some things we can’t, or shouldn’t, control.

The BRCA tests were among the first gene tests to hit the marketplace, and since they involve half the population and are harbingers of so much to come, they’re important and bear watching. That doesn’t make them any easier to deal with. “There are people who come in for their first genetic counseling session, then we never see them again,” said Richard King, director of the division of genetics and molecular medicine program at the University of Minnesota, in Minneapolis. “The risks are scary to face. But I’ve also seen the benefits of testing, even with Huntington’s disease. Families can get things organized and understand things better, be more prepared.

“Would I be tested in that position?” he paused. “I don’t know. I can’t give a direct answer without thinking about it. Just like everyone else.”

A Schism in Our DNA

My mother mentioned something in passing: My Great Aunt Goldie had died of a “stomach ailment.”

“You mean she had ovarian cancer?” I asked.

She hesitated. “It’s possible,” she said. “Though who knows? Back then, it could’ve been appendicitis.”

Oh, she continued, and Great Aunt Jane? On Grandpa’s side? She had breast cancer in her 70s. And Anice, my first cousin once removed? The one who’d lived on a ranch in Montana? Breast cancer killed her in her early 40s. Then there was Great Aunt Minnie; she died of breast cancer too. “But she was phobic,” my mom assured me, as if mental illness changed the physical one. Minnie wore only white and lived in an all-white house in Los Angeles with all-white furniture, including her grand piano. When she got sick, she refused to go to a hospital for treatment — she was afraid there’d be germs there. It seemed to me that Minnie had a lot more to worry about than breast cancer.

I, on the other hand, was getting increasingly nervous — maybe cancer really did lurk in my family’s gene pool. I still hoped to have children; what might I be passing on to them? A year after finishing my breast cancer treatment, I finally mentioned it to my GP. “Everyone has some family history of cancer,” he said, shrugging. But he suggested I make an appointment with a genetic counselor, saying, “I think it will ease your mind.”

I eyed the other patients at the Comprehensive Cancer Center at the University of California San Francisco. Were they getting treatment, or were they also waiting for someone to read their genetic tea leaves? An elderly couple shuffled in with his-and-hers walkers, the legs of which had been made scuff-proof by attaching Day-Glo tennis balls. In another context I might have pitied them their frailty, but nowI found myself envious. At least they’d made it this far.

Calculating My Breast Cancer Risk

My counselor was a young, sweet-faced woman named Lisa, who would assess my risk of a mutation from what was already known; then the decision of whether to get tested would be mine. She took my family history, tapping her pencil on her desk a few times before explaining that a Jewish family with just one case of early onset breast cancer, combined with one case of ovarian cancer at any age, was statistically likely to have a mutation. Then she pulled out a pie chart. “See this section?” she asked, pointing to a large white slice. “This is sporadic breast cancer. It’s random. It represents about 70 percent of all breast cancers. These women have no previous family history of disease.”

I nodded. That, I had assumed, was me. “Now see this section?” she continued, pointing to a smaller, striped area. “These are people with familial cancer, but without any known cancer-gene involvement; they may have other behavioral or inherited factors at work, such as body size or a naturally higher level of estrogen. This represents about 20 percent of cases.’‘

I nodded again. “Now this section,” she said, pointing to a thin, black sliver of the pie. “This is where I think you fall. These are people with a genetic mutation. My suspicion would be that you have a BRCA1 mutation. It carries a 60 to 85 percent lifetime risk of breast cancer and a 20 to 50 percent risk of ovarian cancer.” She went on to say that if I did have children, there was a 50 percent chance that I would pass the mutation on. She continued, but my mind had already floated away. It was so tacky to make that pie segment black, I was thinking, so insensitive. Couldn’t they make it green? Or polka-dotted? Less of a grim reaper?

I focused my anger on the chart; I couldn’t absorb what the counselor was saying. Not yet. If she was guessing right, that meant I could get cancer again and again? And the next time, it could be in my ovaries? If I had children and they got sick, it would be my fault. Should I not have them? What if my mother hadn’t had me?

If I did have the mutation, I finally heard Lisa say, the most effective risk-reducing options for mutation carriers were a double mastectomy and an ovariectomy, removal of one or both ovaries. That is: amputation of healthy body parts. Once again, I gazed down at my body, which suddenly seemed like an assassin, a stranger. I’m a journalist, someone who believes in the power of knowledge. But for the first time in my life, I was weary of information. I wanted to go back to the land of the well; I wanted my visa to this other, desolate country permanently revoked.

The Gene I Didn’t Get

A long time later, I would find a kind of terrible beauty, a poetry in the BRCA mutations. They are ancient flaws, which some say date back to about 75 CE, around the time when the Romans sacked Jerusalem and forced the Jews into an exile that would last nearly two thousand years. There are now as many as 11 million Ashkenazim scattered throughout the world, but, since we’ve had a tendency to intermarry, we mostly descend from the same few thousand forbears. As devastating as the thought of having a mutation was, it was still a tangible connection to my deepest past, to a web of ancestors stretching across millennia. One of my grandparents had carried that legacy, deadly yet sacred, in its history. So had his or her grandparents. And their grandparents. And theirs. The schism in our DNA had flowed through each of them into my own mother’s blood and finally into mine. Somehow, knowing they were all in me — with me — through this made me feel stronger.

I also read about a study of people with perfect pitch. That trait too may be partially genetic and, as it happens, may be disproportionately found in Ashkenazi Jews. My brother has it, as does his son. I do not. Great, I thought. They got the perfect pitch gene, while it looks like I got the cancer gene — and I might add, the fat upper arms.

Taking the Genetic Test

Why is there no exact feminine equivalent of the word emasculated? That’s how I felt about the idea of prophylactically removing both of my breasts. Maybe they aren’t the only source of my femininity, my sexuality, but I’m rather attached to them (as they are to me). We have a lot of history together, me and the girls: standing up to those junior high boys who called me a pirate’s dream (because of my “buried treasure”); chanting the legendary bust-increasing mantra from“Are You There God? It’s Me, Margaret.” (It didn’t work.) Giving pleasure. Getting pleasure.

I had chosen lumpectomy before, in part because I felt it would leave me less scarred, psychologically as well as physically, by my illness. Some women feel the opposite — mastectomy, even when clinically unnecessary, is a reassertion of control over their bodies, their destinies — but I needed to be able to look into the mirror each day and see, more or less, what I always had. I was willing to wager that the kind of breast cancer I had was the kind my body would always make: slow growing and treatable. I had no idea whether that was actually true.

Ovarian cancer was a different story — it’s hard to detect, and nearly 65 percent of sufferers die within five years of diagnosis. I’d seen my aunt’s abdomen swell to the size of a basketball and watched the mischief and vitality drain from her lovely face. “Numbers aren’t the only way women make these decisions,” said Beth Crawford, manager of UCSF’s cancer riskprogram. “If you’ve experienced loss, you may make a different choice than someone with little history of cancer in her family. I’ve met women who don’t have retirement accounts, they’re so convinced that they’ll die young. For them, knowing they can reduce risk with a mastectomy or ovariectomy comes as a relief.”

Yes, No, Maybe?

About a third of the women who test positive in Crawford’s program have risk-reducing double mastectomies, and two-thirds undergo a risk-reducing ovariectomy. Seventeen percent of the latter group have turned out to have early stage, highly treatable cancers, tumors which, without the surgery, would probably not have been caught until they were lethal. That was a pretty powerful argument. On the other hand, I wasn’t eager to experience the jarring discomforts or health risks of early, surgical menopause. “Risk tolerance is different for everyone,” Crawford said. “Some women can just monitor themselves closely and sit comfortably with that; others can’t. Everyone has to come to the decision that best allows them to go forward.”

And what would that decision be for me? I stood at the craps table, feeling truly crappy, wondering what testing would mean to my mind, my body, my heart. I kept shaking those dice for the next six years. Then, at age 41, I gave birth to my daughter, and it became clear: I wanted to be here for her first day of kindergarten, to dance at her wedding and to meet my grandchildren. I needed to be tested. Either way, I’d keep my breasts, but if it came out positive for the mutation, I wanted my ovaries gone. Now. And so one day, in between the breastfeeding and diaper changing, I drove to the hospital, had my blood drawn and let those dice roll. The strangest thing was, I wasn’t even sure which result I was rooting for.

It came out negative.

“We were as surprised as you are,” Crawford told me. “We calculated that you had a 90 percent chance of being positive.

“We call this an uninformed rather than a true negative,” she added, explaining that if you thought of the BRCA gene as a document, the current test functioned as a spell and grammar check: It could find missing, extra or transposed letters and words. But if a whole sequence or chapter was gone, the test wouldn’t know anything was missing and would come out clean. So I might still have a mutation, they just couldn’t yet find it. I’d expected a yes or a no — or, more precisely, I’d expected a yes. But a maybe? No one told me that was a possibility. “Do I still have the ovariectomy?” I asked.

“Well, we can’t really make any recommendations beyond regular surveillance, because you don’t have a known mutation. Maybe in another year or so we’ll have something new to offer you.” She smiled sympathetically. “I’m afraid this is a bit like peeling an onion.”

What’s Next

I walked out of the hospital into the Northern California fog more lost and frightened than when I’d gone in. Perhaps my body really was a time bomb. Or maybe my cancer and my aunt’s were totally unrelated. A fluke, after all. I’d finally gambled on the test, and what did I learn? Bupkes. Part of me wished I had tested positive. At least then I’d know how to protect myself. Instead, I was left with the unknown — like everyone else.

The truth is, it’s not possible to ward off all evil, all disease, all ill luck. Maybe, someday, there will be much better detection, better treatment of breast and ovarian cancers, more understanding of the causes, even cures. I’ll be pushing for all of that, for myself and for my daughter, regardless of our risks. Meanwhile, simple as it sounds, I’m left with one last, best choice: living my life as it comes, every day — just as I always have.

Breast Cancer Special Report

Originally published in MORE magazine, October 2007.

Image of BRCA protein from Protein Data Bank

I Wanted to Leave that Photo Up for Awhile….

…But then Katie Ford Hall sent me this amazing blog post she wrote reflecting on her own bilateral mastectomy after a stage III cancer diagnosis and the on-going conversation about Angelina Jolie. It’s beautifully nuanced and gets at the complexities and subtleties (I think). Take a read.

 

Obie-Dobie Time

I’m off to my college reunion and going on blog hiatus. See you!

My school had the first co-ed dorms in the U.S in 1970,  when college students looked like this. By the time I got there, about a decade later, students were asking for  co-ed dorm ROOMS! (I got this photo form a web site called www.art.com. It is a photographic print by Bill Ray).

More on My Story and Why My Reconstruction is Not a “Sexy Boob Job”

Yesterday, in the comments section of this blog, I was reprimanded by a reader named Becca, a young woman with breast cancer who has chosen to have her healthy breast removed to reduce her risk of future disease.  She took exception to my last post. I wrote a long response to her in the comments section, then realized I’d rather put that response here, where it’s more visible. Here is what Becca wrote:

Fear is not the only reason women get bilateral mastectomies. Younger women with breast cancer (like myself, diagnosed at 35) are more likely to have this surgery for a lot of reasons, such as:
* we have many more years of life to develop a new primary in the other breast. My surgeon, also at MSKCC, estimated my risk to be 25% or higher. (I’m BRCA negative)
* we want a symmetrical chest
* we want to lessen our need for additional surgeries in the future, which we would likely need to achieve symmetry as our natural breast aged.

I’m starting to resent this idea that women are getting too much surgery because we are uninformed, pressured by our doctors, or sniveling cowards. I’m part of a group of about 1000 young women who’ve had breast cancer. Most of us had bilateral mastectomies. None of us regret it. The women who do have regrets? Those who need constant monitoring of the “good” breast — which means every-6-month mammograms or MRI, and biopsies of anything suspicious. Those trying to get dressed every day while being very lopsided. But most of all, those women who end up developing a new breast cancer and have to go through surgery/chemo/radiation AGAIN. I think you’re downplaying how terrifying, disruptive, difficult and damaging this is to a woman.

Bilateral mastectomies are not the right choice for every woman diagnosed with breast cancer. But they were right for me, and for so many of my co-survivors. Please respect our choices too.

Also this: “Anyone can have body parts cut off.” What!? Really?

 

And here is my response:

Becca, I understand how emotional this issue is, believe me. I’ve been through cancer treatment twice, the first time at a very young age. In fact, I’m still in cancer treatment and will be until at least 2017.

I don’t think women who choose bilateral mastectomy are cowards. But I also don’t think they are heroes. Not even Angelina Jolie. Is she really braver than someone who opted for surveillance, or to have her ovaries removed? If so, why?  So many of the choices we have with cancer are murky and lousy. My point in saying that “anyone can cut off body parts” was that if that’s where she stops it is really not enough. Rather than arguing, we who have faced this need to be agents of change, to educate ourselves as thoroughly as possible and push for better  options for the next generation so they don’t have to go through what we did. I don’t want my daughter’s only choice, should they some day find a new genetic mutation that I have and, Heaven forbid, she has, to be the brave choice of surgery. I just don’t. Nor do I don’t want women to believe we can amputate our way out of an epidemic.

You may have made a fully informed choice to remove both breasts. I have a number of friends over the years who’ve made the same decision and they were also fully informed.  But the research clearly indicates that many women–perhaps not you or your friends or my friends– are opting for  bilateral mastectomies without an accurate understanding of their risk or education about what the procedure will and will not do for them in terms of future cancer. I can’t believe you would think that’s ok. Women (typically cancer patients are older than you or I) are estimating their risk of a new cancer over ten years to be 30% when it is closer to 5%. If they are basing surgery on that assumption, it is simply not informed choice.

It also worries–and, frankly, offends–me that Angelina Jolie’s reconstruction is being called a “boob job.” If you accuse me of playing down the disruptiveness of surveillance (though personally I never found it especially disruptive), I would say the far bigger danger at this moment  is playing  down the risks and realities of  mastectomy.

Gayle Sulik writes about the aggressive publicity campaigns launched by some reconstructive surgeons since Jolie’s announcement. I have, as a journalist, experienced a similar onslaught and find it repugnant.  These PR-releases also only discuss the positives. None mention women who after reconstruction suffer, as Sulik writes, ”on-going pain and weakness, scar tissue, nerve damage, risks of infection and implant rupture, and other complications.” I’ve known many women with implants, which is what Jolie has and what you apparently have. Some are very happy with them as you are. They are lucky. Others have had constant issues and deflations and multiple surgeries and wish they’d never done it. Some implants look relatively natural. Others harden and look like bad porn star boobs. Flap surgeries, which I had, carry their own risks, of which I was informed.

What’s more, no matter how good-looking or  symmetrical reconstruction may be, it is, essentially, a permanent prosthesis. A reconstructd breast has no sensation. You may look good in clothes and hot  to others, but you will feel nothing when touched. It is the sensory equivalent of having a ball of socks on your chest. Why isn’t that out there along with Angelina’s “beautiful results” so women considering such surgery are fully informed? I  find that when I tell my friends that my reconstructed breast is numb they are shocked: they had no idea that would be so. Just like they don’t know that breast cancer in your breast doesn’t kill you. Just like they don’t know that breast cancer doesn’t spread laterally. Just like they don’t know that lifetime risk is not the same as current risk. If you understand all of that, again, and you choose bilateral mastectomy, that’s fine. Or if mastectomy is required, as in my case, that’s the way it goes. But I am extremely concerned about misinformed decision-making.

Also, I’m sure you know that while you may not need surgery to adjust for sagging, implants tend not to last more than about 10-15 years. So, since you were so young, you will eventually need additional surgeries to replace the implants. Your implants may also get in the way of detecting a chest wall recurrence.

I was also diagnosed young: in 1997, at 35 years old. I considered mastectomy at the time, but since lumpectomy with radiation has been proven over and over to be equally effective (possibly more so) that was the direction I went. I did have concerns about the radiation at  such a young age, and it wasn’t an easy decision.

I never considered removing my healthy breast (I tested BRCA-) although my  risk of a new primary in my other breast was also about 25% over my lifespan.  I figured that made my risk 13% higher than someone else’s over several decades. Which sucks, but  then again, there was a 75% chance I wouldn’t get a second cancer. At that time I didn’t take tamoxifen, which would’ve reduced that risk considerably. The drug puts you into menopause, at least temporarily, and I wanted to have a child. Since my recurrence I have started taking it and it lowers that lifetime risk in the other breast to 12%–that of an average woman. You may have a more aggressive form of disease than I did, or a form that won’t respond to tamoxifen. That is a different set of decisions as well. A woman who dislikes the size, shape or other aspects of her healthy breast may also make a different set of choices and be less concerned with sensation.

There were benefits to waiting to do a mastectomy (though I didn’t do mine by choice). As an older woman (and after having a baby) I have enough belly fat to use for  reconstruction. I was too thin to do that in my 30s (sigh) and, anyway, it was less commonly done. That means my new breast is not an implant. It was made from my own flesh. It won’t degrade. It matches my healthy breast and will (for better or worse) be similarly affected by gravity. So no replacement down the line, no nip and tuck. I am done with surgery. And I am not, nor will I be, “lopsided” as a result of keeping my healthy breast. (I probably would have had an implant if I could have–the initial surgery is WAY easier, but I’m glad it ended up this way).

I also benefited  because nipple-sparing mastectomy was not then available. Now it is.  Again, still no sensation, but it looks better. For those considering prophylactic mastectomy who can possibly delay, know that there are new techniques in the offing that may be less invasive and create a better result. Maybe, some day, they will even spare the nerves. That’s another reason to take into account how your risk changes over time.

Becca, being diagnosed with cancer young is horrifying and scary and I’m sorry it happened to you, too. Often it means the cancer you have is more aggressive. This was not the case for me (I have “little old lady” cancer) and I hope it’s not for you. It may interest you to know what has happened to the women in my initial support group of women under 40 with breast cancer.

Sadly, two have died. They had aggressive disease from early on and mastectomy would have made no difference to them.

Those of us who are still here are now in our fifties with full, busy lives. Most of us are faring well. Two have metastatic disease;  one has been living with mets for 15 years. A mastectomy would not have made a difference to either of them. Three have had chest wall recurrences, one despite mastectomy. I am the only one who has had a local recurrence.

Removing my healthy breast would not have changed that. Admittedly, a mastectomy would have. Still, the chances that this would have happened were very small–maybe 6% at most. There have been advantages to delaying mastectomy 15 years. And while a local recurrence does raise my risk of metastatic disease, it is not by much. So for me, living with that small risk of recurrence was worth it, even though things have not fully gone my way.

Everyone else, as far as I know, has remained healthy and I hope always will. Three of us who had not yet had children have gone on to become mothers, which has been a great gift.

In every case except perhaps mine, our status has played out as the original biology of our tumors would predict.

No one has been diagnosed with a new cancer in her other breast.

I hope for and work towards better options so that none of our friends, sisters, mothers, aunts, daughters, neighbors etc will have to face the choices we did.

Be well.

Image 2This is what my  cancer looks like under the microscope. Weirdly pretty, isn’t it?