Recent Articles

December 7, 2014
When Cancer is Not Cancer
The California Sunday Magazine

July 27, 2014
The Wrong Approach to Breast Cancer
The New York Times

June 14, 2014
The Battle Over Dress Codes
The New York Times

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

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

more articles >

More on Mastectomy, Accurate Information and Treatment Choices

I’ve been camping since last Saturday, so wasn’t here when my story on contralateral mastectomy was published in the New York Times.  In its aftermath, I’ve gotten positive feedback from researchers, physicians and advocates, including Karuna Jagger of Breast Cancer Action, who wrote this follow-up; Gayle Sulik, author of Pink Ribbon Blues and founder of the Breast Cancer Consortium; and Susan Love, author of Susan Love’s Breast Book (bible for the newly diagnosed) and medical director of Dr. Susan Love Research Foundation. The blogger who goes by The Risky Body also wrote two really thoughtful responses  aimed at–though not exclusively for–the community of women with a known BRCA mutation.

I’ve  received email from individual women in the throes of making their initial treatment decisions; from women who chose CPM and later were diagnosed with metastatic disease; and from those for whom the decision to remove the healthy breast went horribly, painfully awry (reminding me that we tend to underplay the risks and potential complications of surgery.

I’ve also read online the articles in response to the piece by those who chose CPM and are happy with that decision or who want to explain their point of view. Like this one on Slate, and this one on Forbes. So for them, in particular, there are some things that I’d like to clarify. First of all, I want to reiterate that the data on survival does not apply to those who carry a genetic predisposition to breast cancer (such as a BRCA mutation) or those with a strong family history of the disease. It applies to women who were at average risk of contracting breast cancer and are at average risk of contracting a second cancer. The vast majority of women choosing CPM fall into this category, by the way.

There were so many things I couldn’t fit into a 1200 word article–had I been able to write something longer I could’ve been far more comprehensive and nuanced. That said, I made the points that were most important to me to make. Two interesting facts I couldn’t fit in: one, this trend towards CPM has happened even as treatment reduces the likelihood of contracting a second cancer. I find that interesting. Also, this is an American phenomenon: according to Todd Tuttle, chief of surgical oncology at the University of Minnesota (Ski-U-Mah!) there was not a similar uptick of CPM in Europe over the time period studied. It’s worth noting that there is also no greater incidence of contralateral cancer or death from the disease there over that time period. Nor do European women seem to choose CPM for cosmetic or other reasons cited by American women.

Why the difference? One reason, according to researchers, is the rise in use of MRIs, which have an inordinate rate of false positives, subjecting women to the physical and psychological stress of unnecessary biopsies. According to researchers at Sloan-Kettering:

Women who had a breast MRI as part of their preoperative evaluation were three times more likely to choose CPM,” she says. MRIs may detect additional areas of breast cancer that are missed by mammography, but the rate of false positives is quite high. “If the MRI finds something that looks suspicious, many women say, ‘I would rather just have a double mastectomy than go through the process of having biopsies on my other breast.’

Another reason, is that choices are not made in a vacuum. They are made in a cultural, political and economic context.  As I wrote in my New York Times Magazine piece last year (and Karuna Jaggar wrote this week, in the piece linked above), pink ribbon culture has inadvertently stoked a fear of breast cancer so that women consistently over-estimate their risk of disease. In the end, I believe, that over-estimation comes at the expense of effective advocacy.

My goal with the CPM piece, as with all my pieces on breast cancer, was to report solid information that has not been adequately reported in mainstream media, information that can reduce harm—such as over-screening and over-diagnosis—and tremind people of what is important about breast cancer advocacy: reducing the number of women who are harmed by and especially who die of breast cancer. To my mind that means focusing on potential environmental factors involved in the disease; focusing on prevention; focusing on less toxic and more effective treatment; understanding DCIS and, in particular, understanding the mechanisms of metastatic disease. One concern I had about the rise of CPM–and the statistics showing the rise was due to over-estimation of its benefits and over-estimation of the risk of a second cancer– was that by giving women a false sense of security, misleading them into thinking they were improving their odds at survival, it would detract attention and resources from where they need to go. I can’t imagine that anyone, including those who chose CPM for some other reason, would think that was a good idea. I can’t believe anyone, including those who chose CPM for other reasons, would want women to choose it because they are misunderstanding risk and benefit. I can’t imagine anyone including those who chose CPM for other reasons, would want women choosing CPM because they think it will save their lives when multiple studies–and this new one in particular–have shown that it won’t.

The research on CPM is clear, in multiple studies, that many women pursue it both because they over-estimate their risk of a second primary and because they believe CPM will be life-saving (I’ll put some links at the end of this post). Again, I would think that regardless of why you personally chose CPM you would believe it is important that newly diagnosed women make their decisions based on accurate information. In Todd Tuttle’s research, cited in my New York Times Magazine story, women estimated their chances of contralateral cancer to be 30% over 10 years when it was actually less than 5%. Maybe the women who have written in response to my piece that they chose CPM for other reasons already knew that, but obviously many women do not. Do you really want them making decisions about surgery based on such misinformation? That scares me. And it’s wrong from a public health perspective.

From that perspective women should understand, loud and clear, that CPM is not, for a woman at average risk of cancer, a medical necessity. As Steven Katz said to me during our interview, conversations with the newly diagnosed should start with, “CPM is a futile procedure in terms of prolonging life.” Then– again from a public health perspective–we can have a discussion about whether surgery should be the frontline treatment for those with intense fear or anxiety about cancer even when that surgery has no medical basis.

A number of women have written to me and said they had CPM for cosmetic reasons. That’s a choice, certainly, as any cosmetic procedure is a choice. In making it, you certainly have to balance the risks of surgery with other factors. Personally, I’d like newly diagnosed women to know that I don’t feel at all “unbalanced” with one fake breast and one real breast. My breasts are not asymmetrical, or no more asymmetrical than the average woman’s or than they were before after 50+ years of wear and tear. With my clothes on—including scoop necks and low-cut bathing suits–you can’t tell at all. Naked, my breasts look about as good as they did before, though the reconstructed breast has more scars both from where the tumors were removed and because in the last four months I’ve had two biopsies on that side (both turned out to be–guess what?–not one but TWO rare surgical complications….). Also, again in the spirit of full disclosure, my previous radiation compromised the nipple-sparing surgery, so while I have a nipple it doesn’t look as good as it might or like the one on the other side. CPM wouldn’t have changed that. But if those things weren’t true, you’d have a hard time visually distinguishing the fake from the real. Internally (i.e., to me) they do feel different. My natural breast feel natural. My fake one feels like I’m wearing a tight bra all the time that I can’t take off. Women who are considering implants (I have a DIEP-flap because my previous radiation makes implants difficult) can certainly wait to have a second breast removed and reconstructed to see how they feel about it, even though it does mean further surgery. But, really, there’s no rush. DIEP has to be done all at once, which complicates the issue. Ultimately, I would advise a woman considering her choices who is concerned about symmetry to talk to those who have had DIEP on one side and on both sides and ask, if possible, to see their breasts. I’m happy to show mine (but only in person—not on the web!!) . You really have to see reconstruction in person to totally get it.

As for those who have decided to go flat, that too is an option and always has been. I definitely considered it. As long as it’s understood that it’s not life-prolonging for those at average risk or that what you’re doing is somehow implicitly superior (in terms of treatment or in terms of maternal sacrifice) to those who, say, have a lumpectomy and radiation.

Anyway. I’m not here to litigate anyone’s past choices, including my own. My belief is that you make the treatment decisions that you make with the information you have at the time of diagnosis understanding that such information may change, become obsolete or incorrect. And you don’t look back. When I was originally diagnosed chemo was not recommended. A few years later, all women under 40 with cancer were treated with chemo as a matter of course. Oops. A few years after that, they went back to the way it was when I was first diagnosed. Oops again. I was among the first women to have a modified sentinel node biopsy. A few months earlier, they would’ve done the big scoop. A few months later, I would have had an actual sentinel node biopsy. So it goes. I’ve been around this world a long, long time. Longer than most patients, I’d wager. I’ve seen a lot.

I think about the women who had the Halsted radical mastectomy (which, according to Robert Aronowitz, even he knew would only prevent local recurrence, not metastatic disease); I wonder how they felt when it first became clear that lumpectomy and radiation would have sufficed. Were they resistant? Angry? Sorry? Did they celebrate that other women, that their own daughters, would not have to go through what they did?

Because that is the great news, isn’t it? Women at average risk do not have to fear keeping their healthy breast when diagnosed with cancer. I’m so grateful for that for the sake of anyone diagnosed in the future. And again: shouldn’t we be making sure that newly diagnosed women know that so that they make their decisions from a perspective of the greatest knowledge?

Finally,  as promised, here are some links beyond those listed above. I would encourage anyone interested in this issue, whether or not you have chosen CPM, to actually look at the research.

Increasing rates of CPM among women with DCIS

CPM among women with sporadic breast cancer

Increasing use of CPM among Breast Cancer Patients: A Trend Towards More Aggressive Treatment

Dana-Farber study on young breast cancer patients  over-estimating the benefit of removing the second breast.

Preventative Mastectomy Does Little to Increase Life Expectency (CBS News)

Tara Parker Pope on CPM

An interview with Steven Katz

The Cost of Peace of Mind

I imagine that now I will get a lot of comments from women explaining why they personally had CPM. That’s fine, I guess. But not the point. The point is to ensure women have a realistic understanding of what the procedure can and cannot do for them. It is tragic and even cruel for someone to have CPM based on the false belief that it will prevent death. I hope we can all agree on that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Alone in a Room on National TV

So you know when you’re watching CNN or MSNBC or FOX news orPBS or whatever and they have some talking head on a monitor chatting with the host? Well here’s how they do that when you’re the guest: you are sitting alone in a black-walled, darkened room staring into a camera lens. You do not see the host. You do not see the other guests. You do not see yourself. You have no idea whether or not you are on-screen at any given moment. You hear the host and the other guests through the earpiece and you talk earnestly at nothing at all. It’s a seriously weird deal. But that’s how it goes, especially if you live in California and most of the media is in New York. I never get used to it. But I did it the other night because I was asked to be on the PBS News Hour with Gwen Eiffel and, really, how cool is that?

Anyway, here’s how it came out:

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.