Does abortion cause breast cancer? No. No, it does not. Also, feminism does not cause breast cancer, in case you were wondering.
Get Up Swinging tackles anti-abortion propaganda that preys on women’s fears of breast cancer.
1. Ovarian cancer screening doesn’t work. CA-125 tests and transvaginal ultrasounds rarely detect cancer before stage IV. In fact, at the Joining Forces conference, Dr. Noah Kauff showed a disturbing slide demonstrating women who are screened for ovarian cancer actually have higher mortality rates than women who are not screened. (Seriously, that slide was horrifying)
2. Self-breast exams don’t work. They do not detect cancer early, because by the time a tumor is palpable it has already been growing for many years. Women who do self-breast exams regularly do not have better survival rates than women who don’t do them, but they do have more biopsies, mammograms, MRIs, doctors appointments, false alarms, and anxiety.
3. Mammography doesn’t work, at least for women under the age of 50. It doesn’t detect cancer early as promised, even if you buy into the myth of early detection (which you shouldn’t). In fact, breast cancers typically grow 6-8 years before they’re detected by a mammogram. Younger women–that is, premenopausal women–have more dense breast tissue that hides tumors on mammography film. And again, it has repeatedly been shown that mammograms do not save lives, but they do lead to more biopsies, false alarms, and over-diagnosis of DCIS.
Now here’s a fun new fact: pelvic exams don’t work either.
Recently, the American College of Physicians (ACP) put out new guidelines that recommended “against performing screening pelvic examination in asymptomatic, nonpregnant, adult women”:
“Pelvic examination is commonly used in asymptomatic, nonpregnant, adult women to screen for pathology. Evidence shows that the diagnostic accuracy of pelvic examination for detecting ovarian cancer or bacterial vaginosis is low. The PLCO trial and cohort studies suggest that the screening pelvic examination rarely detects noncervical cancer or other treatable conditions and was not associated with improved health outcomes. The PLCO trial found no reduction of ovarian cancer mortality rates by screening with pelvic examination or by screening with CA-125 or transvaginal ultrasonography, both of which are more sensitive for detecting ovarian cancer than the pelvic examination itself. Thus, there is indirect evidence that pelvic examination (as distinct from cervical cancer screening) in asymptomatic, adult women does not reduce morbidity or mortality rates. No studies were identified that addressed the diagnostic accuracy of the pelvic examination for other gynecologic conditions, such as asymptomatic pelvic inflammatory disease, benign conditions, or gynecologic cancer other than cervical or ovarian cancer. Many false-positive findings are associated with pelvic examination, with attendant psychological and physical harms, as well as harms associated with the examination itself. Harms of pelvic examination include unnecessary laparoscopies or laparotomies, fear, anxiety, embarrassment, pain, and discomfort. Women with a history of sexual violence, and particularly those with PTSD, may experience more pain, discomfort, fear, anxiety, or embarrassment during pelvic examination.”
Pelvic exams do more harm than good. They lead to false positives. They traumatize women who are survivors of sexual violence, as 1 in 5 American women are and 1 in 4 female college students are. They’re humiliating and sometimes painful. Women who fear or dislike them (and who doesn’t dislike them?) may avoid going to the doctor to avoid a pelvic exam. Most importantly, pelvic exams do a poor job of detecting gynecological diseases and do not lead to lower mortality rates from gynecological cancers. In short, pelvic exams are a waste of time, money, and emotional energy.
I’ve already seen some women express disapproval of the new ACP recommendations, just as many women expressed disapproval over the new guidelines that came out a few years ago that recommended against mammograms for women under the age of 50. It seems many women are accustomed to certain protocols and find them reassuring. But women’s healthcare should not be based on supplying false reassurance.
Some women, like Amy Robach in this interview, vehemently argue that a mammogram, self-breast exam, or pelvic exam found their cancer and saved their lives, despite scientific evidence that shows otherwise. So let’s be perfectly clear. Mammograms, self-breast exams, and pelvic exams do detect some cancers. However, detecting cancer and improving survival rates are not the same thing. So yes, an individual woman’s cancer may be found by these methods, but that doesn’t mean her odds of survival are any better than a woman whose cancer was detected later or by other methods.
[Warning: historical digression ahead. I have a point, I swear.]
In the early-to-mid-twentieth century, women who found suspicious lumps in their breasts were anesthetized for biopsies. If cancer was found, doctors immediately performed Halsted mastectomies without waking up their patients from anesthesia. In other words, women were not consulted about whether or not their bodies were going to be brutally disfigured when their breast cancer was treated–can you imagine what that must have been like?
In case you need a reminder of what Halsted mastectomies did to women’s bodies:
All this, despite decades of scientific evidence conclusively demonstrating that Halsted mastectomies were utterly unnecessary for the treatment of breast cancer and that women who underwent Halsted mastectomies actually had lower survival rates than women who had simple mastectomies or breast-conserving lumpectomies.
Why did doctors keep performing Halsted mastectomies despite conclusive evidence that they were unnecessary and ineffectual? Because physicians simply preferred doing immediate Halsteds, no matter how detrimental they were to patient health and well being. Doctors believed, despite incontrovertible research otherwise, that radical surgeries saved lives–just as many women believe, despite incontrovertible research otherwise, that mammograms save lives.
In the 1970s and 1980s, feminist health activists fought long and hard to get surgeons and oncologists to base clinical decisions for female patients on well-designed scientific studies and randomized clinical trials. Breast cancer activist Rose Kushner spent hours in medical libraries exhaustively reading medical journals after she found a lump in her breast and devoted the rest of her life to scientifically driven women’s healthcare. And yes, Kushner was a feminist. (Check out Barron H. Lerner’s Breast Cancer Wars for more on this topic)
Ok, so here’s why I have indulged in this historical digression on immediate Halsted mastectomies and feminist activism:
It drives me absolutely crazy to see some women in the BRCA+ community dismissing overwhelming scientific evidence in favor of personal anecdotes. Activists like Kushner spent their lives fighting for women’s healthcare to be based on reputable research studies, rather than the personal preferences of male physicians and the patriarchal medical industry. This shift took decades. It was hard won. It improved the lives of countless breast cancer patients and their families. Show some respect.
The ACP recommendations against pelvic exams are based on 70 years of medical research, not anecdotes. Instead of denying the evidence that ovarian cancer screening, mammograms, self-breast exams, and pelvic exams are a waste of time, BRCA+women should be furious. After all, we’re subjected to ineffectual and scientifically unproven screening methods far more than average women. This puts us in an untenable position. We are at high risk for breast and ovarian cancer. We need to be screened for it often. Current screening methods for breast and ovarian cancer are lousy. What are we supposed to do?
I am so fucking sick of this shit–the constant appointments, the long waits, the anxiety, the endless copays, and the fights with insurance to make them pay for humiliating exams and testing. Cancer screening disrupts my life for months on end multiple times a year, and it pisses me off to find out it’s deeply flawed, if not downright ineffectual. I’m not a physician or a scientist. I don’t know what should take the place of antiquated screening methods, but I can read and interpret scientific studies. I understand when my time, money, and emotional labor is being wasted on bullshit protocols.
We need better screening for women’s cancers. If breast cancer history is any indication, then the first step to getting better healthcare for BRCA+ women is accepting that old methods don’t work and demanding better.
I get it: risk-reducing bilateral salpingo-oophorectomy (RRBSO) is the only proven way to protect high risk women from ovarian cancer, a disease that is particularly hard to detect, psychologically and physically devastating, and usually deadly. There are currently no accurate ways to screen for it in symptomless women and by the time symptoms do arise the cancer has almost always already spread beyond the pelvis and it is too late to save the patient’s life. Moreover, the only way to make a diagnosis for ovarian cancer in women with symptoms is surgery, which is at best unpleasant (as I can attest) and at worse can lead to life-threatening complications (as a friend of mine who nearly died during her seemingly routine RRBSO can attest). RRBSO is the only scientifically proven way to prevent ovarian cancer and, as a bonus, also reduces the risk of breast cancer. It’s absolutely clear that oophorectomy saves women’s lives.
Oophorectomy brings its own horrors. Surgical menopause is no joke. A recent UPenn study found that the vast majority of women who undergo RRBSO experience some form of “sexual dysfunction, menopausal symptoms, cognitive and stress issues, and poor sleep” after surgery. I couldn’t help but roll my eyes when I saw this study: after all, thousands upon thousands of women in the BRCA+ community have been griping about surgical menopause for decades. Did we really need a study to tell us premature menopause is bad? Apparently so, if we want doctors and researchers to take us whiny hysterical ladyfolk seriously.
Despite the fact that oophorectomy is a surgery with serious repercussions, BRCA+ women are pressured (by other BRCA+ women, by doctors, by researchers, by genetic counselors, etc.) to undergo RRBSO after child-bearing is completed and by the age of 35. The pressure to get an oophorectomy by 35 is even more intense than the pressure to have a mastectomy, since removal of the ovaries also reduces the risk of developing breast cancer. From my (very, very pre-menopausal) perspective, oophorectomy is a far more radical surgery than mastectomy, as difficult as that procedure undoubtedly is, because removing the ovaries throws women into instantaneous surgical menopause. The ovaries continue to help regulate hormonal function in women even after natural menopause and oophorectomy has a range of often unpredictable side effects and not well-studied medical repercussions.
When women do not live by the commandment to remove their ovaries by 35, they are often explicitly or implicitly blamed for their own cancers. Take this otherwise sympathetic article entitled “Cancer sufferer Elisha Neave, who chose to delay preventative surgery dies aged 36.” The headline suggests that if only Elisha had followed HBOC recommendations and removed her ovaries by 35, then she would be alive today. After Elisha passed away, many BRCA+ women responded to this particular headline by expressing empathy for her and her family, but also by asserting the importance of early oophorectomy for high risk women. As I’ve written before, there’s a huge flaw in this logic: Elisha’s choice to delay oophorectomy was well within the guidelines for BRCA+ women. Her ovarian cancer struck unusually early, even for a BRCA+ cancer, and official guidelines cannot account for cases like hers. In other words, the oophorectomy by 35 commandment wouldn’t have saved her. (Incidentally, it’s funny/infuriating how BRCA+ women are censured by the general public and mass media for both choosing and not choosing to have prophylactic surgery. We just can’t win.)
The often repeated deadline to have an oophorectomy by 35 is misleading, for a variety of reasons. For starters, BRCA1 and BRCA2 mutations carry significantly different risks for ovarian cancer, which require somewhat different surgical management. What’s more, ovarian cancer in BRCA1 and BRCA2 women tend to develop at different points in their lives. BRCA1 women are more likely get ovarian cancer after the age of 40, while BRCA2 women are more likely to get it after the age of 50. Again, this means that BRCA1 and BRCA2 require different surgical management strategies. Few things bother me more in the BRCA+ community than hearing “oophorectomy by 35” get bandied about as a set-in-stone commandment when in fact the timing of oophorectomy might differ significantly according to which genetic mutation you have.
Speaking of commandments, who gave us this one? At the Joining FORCEs conference a few weeks ago, Dr. Noah Kauff noted that the “oophorectomy by 35” deadline actually originated in a misreading of his own research. In his study, he and his co-researchers observed that RRBSO after 35 is reasonable for BRCA+ women. Somewhere in the telephone game of media reportage and social media that recommendation got turned into a hard and fast rule, but it’s not. To my surprise, Dr. Kauff said that because BRCA2 women are less likely to develop ovarian cancer than BRCA1 women and that when they do it usually emerges after the age of 50, he doesn’t even recommend screening BRCA2 women for ovarian cancer until the age of 40 and may even counsel a BRCA2 patient to delay oophorectomy until her early-to-mid-40s (depending on the patient, of course).
What was so refreshing about Dr. Kauff’s presentation is his acknowledgement that BRCA+ women should have individualized prevention plans based upon their particular situations, family histories, and mutations. This was not the sort of attitude I saw among many male doctors at the Joining FORCEs conference, most of whom were clearly on TEAM OOPH. For instance, during his presentation on testing for founders mutations abroad, Dr. Steven Narod commented that “The benchmark for success is the number of oophoretomies performed on healthy women.” His reasoning is that oophorectomies are the only proven way to prevent ovarian cancer in high risk women. He’s not wrong, but the issue is far more complicated than a unilateral approach suggests.
And yes, TEAM OOPH is a boys’ club. Women doctors and researchers are far more likely to acknowledge that surgical menopause comes with an array of negative psychological, cognitive, and other effects, some of which are temporary and simply unpleasant and others that may be chronic and serious (at the same conference, Dr. Karen Hurley remarked that BRCA+ women face an “avalanche” of imperfect choices–truer words have never been said).
History tells us that patriarchal medicine has long removed female organs with little regard for women’s desires, agency, and quality of life. The prevalence of unnecessary hysterectomies even today is just one example of the ways in which this cavalier attitude towards women’s bodies continues in modern medicine. The truth is that the female reproductive track has not been well studied and there’s a lot that remains a mystery about such quotidian biological processes as menstruation and hormonal cycles. Considering this context, it’s little surprise that ovarian cancer in particular is poorly understood. The solution to such widespread ignorance about female organs should not be removal. It should be more research.
But research takes time and although important work is currently underway, it won’t be done in time for many BRCA+ women who need to decide how to lower their risk of ovarian cancer. For now, oophorectomy will remain an important option for risk reduction for BRCA+ women.
While we wait, the BRCA+ community–patients, doctors, researchers, genetic counselors, groupies, etc.–need to make some attitudinal changes.
I really disliked Kevin Davies’s and Micheal White’s Breakthrough, but on the plus side, it had this choice bit of info: “It is true that [Mary-Claire] King’s unwavering opinions irritate some of the male scientists with whom she comes in contact. She has strong feminist sentiments and, although certainly no man-hater, she can be quite scathing about male behavior. On numerous occasions, she has been critical of the patriarchal aspects of scientific research. Once, in comment on those men critical of her work in breast cancer, she said, ‘My colleagues were very skeptical, and you know how skeptical boys can be. Scorn! Scorn! Scorn!'” (72).
Again, Davies and White present feminism negatively, even when it comes to one of the heroes of the BRCA1 story, Mary-Claire King, a woman who spent 20 years looking for the genes that cause hereditary breast and ovarian cancer despite the derision of her male colleagues.
I would guess that nearly every woman in a male dominated profession has encountered the kind of “Scorn! Scorn! Scorn!” King describes, but which Davies and White seem to dismiss. In a recent interview, Mary-Claire King has this to say about patriarchal science:
INTERVIEWER: “Is it still hard to be a female scientist? Is there more pressure and competition now?”
MARY-CLAIRE KING: “The social structure of science is now very different than 40 years ago, wonderfully so. But scientific success is still difficult for young women because the years that one must be most productive, in order to establish oneself as an independent investigator, coincide exactly with the years of childbearing. It is a tremendous challenge. It can be done, but it takes a village. We need to maintain constant attention to the personal and institutional and policy details that can keep the chance for scientific life open for young women.”
So I guess that one of the few good take aways from this book is that it confirms something I’ve long suspected: Mary-Claire King is a raging feminist. Rage on, Mary-Claire, rage on.
I leave you with the trailer for the film about King’s persistence in finding BRCA1, Decoding Annie Parker, which you’ll be able to see in wide release next year. Weirdly, in the interview I cited above, King says that the makers of the film didn’t consult her about it. It seems strange and rude to make a film about an accessible living figure without even dropping them an email. Luckily, she liked the movie, but still: not cool, filmmakers, not cool.
One word: Meh. Then a few more: what the hell?
First, the “meh.” Kevin Davies’ and Michael White’s Breakthrough: The Race to Find the Breast Cancer Gene (1996) is a boring book, even for someone as thoroughly obsessed with BRCA1/2 as myself. Breakthrough was published in 1996, so it must have been rushed into publication pretty fast after the discovery of BRCA1 in 1994. In fact, it barely covers the discovery of BRCA2–by the book’s end, BRCA2 has been “localized” on chromosome 13, but not yet located (as it would eventually be in 1996). The book may have been stronger if the authors had taken some more time to write it.
Davies and White trace the competition among scientists to find the breast cancer gene in the early 1990s, but while the discovery itself is historically important, many of the players involved are not that interesting. What’s more, the authors largely adopt an “objective” journalistic tone and they frequently miss the chance to engage in some down and dirty cultural analysis or critique. For example, they discuss Mark Skolnick’s founding of Myriad Genetics, but largely let him off the hook for allowing the profit motive–AKA his greed–get in the way of affordable mass testing and research. Gene patenting was the hot button BRCA+ issue for over 15 years before the Supreme Court invalidated Myriad’s patents on our data in 2013. Davies and White barely touch the surface of this issue.
Much of the information that the authors present on breast cancer and BRCA1/2 is out of date by now. It’s been 17 years since it’s publication, so that’s to be expected. Still, the book is often painfully and self-consciously 90s with its frequent comparisons of BRCA1 to HIV, Hillary Clinton’s attempts to establish universal healthcare in the United States, and an overwhelming sense of optimism. All that’s missing is references to the “global village” and a rhapsody about the World Wide Web. The authors believe that the discovery of BRCA1 is going to revolutionize breast cancer prevention, detection, and treatment. In the end, I’m struck by how much hasn’t changed about breast cancer treatment in nearly two decades.
Now for the “what the hell?!” parts. The book ends with a rumination on the state of breast cancer culture in 1996. The authors opine that breast cancer has taken center stage and is receiving more funding than ever. And then, bizarrely, they start attacking feminism.
For instance, in one baffling passage they note: “Curiously, the preventive mastectomy option is significantly more common in the United States than in any other country in the world, but the reasons for this are unclear. It has been said that the preventive mastectomy response smacks of hysteria or is an expression of some convoluted radical feminism” (245). The passage begs the questions: who actually said these things that have “been said”? The passive voice of this quote (“it has been said”) makes it so that Davies and White can make this ridiculous argument without seeming to make any argument at all. I can only imagine that the convoluted logic here is that feminists supposedly reject femininity and therefore want to destroy the secondary sex characteristics that seem to define femininity. That, of course, is absolutely absurd, since feminists have long fought for women to have the freedom to make uncoerced decisions regarding their bodies and health.
And then things get more weird. The authors critique Gloria Steinem for not speaking out more about her own experiences with breast cancer, as though she’s obligated to discuss the details of her health with the entire country. And this bit of what-the-fuckery:
“According to conservative author Midge Decter, NOW is simply not interested in breast cancer, ‘Theirs is a leftist, radical agenda–not a woman’s agenda,’ she claims. ‘And what’s wrong with cancer as a cause from the point of view of the feminist movement is that they can’t identify anybody who did it to them. They’re therefore just not interested.’
Feminists have been used to taking control of their own destiny, of fighting and issue head-on. When it came to breast cancer, they were trapped by their own philosophy. Feminist lore during the 1970s made it clear that the way forward was for women to look after themselves and to control their own future, so any movement endeavoring to funds from the establishment to help cure women of a disease over which they have naturally had no control was anathema to the feminist ideal” (256-7).
WRONG, WRONG, WRONG. Davies and White need a lesson in breast cancer history: as I’ve said before, second wave feminism started the breast cancer movement via the women’s health movement of the 1970s, which was an explicitly feminist enterprise. This is well documented. Furthermore, feminism is not about individual women taking control of their individual destinies. It’s about achieving equality and opportunity for women as a class–that is, for all women, not just individuals. For this reason, feminists have a huge stake in breast cancer culture and research.
It’s also pretty funny to hear the National Organization for Women being called a “radical” organization, when it is frequently attacked for being too mainstream. It is, in fact, a “liberal feminist” organization and by definition not radical. But hey, what else can you expect when the authors consider an anti-feminist wingnut like Midge Decter to be citable expert. Decter, by the way, wrote a book called The New Chastity and Other Arguments Against Women’s Liberation (1972) and founded the reactionary Independent Women’s Forum. She about as much of an authority on feminist attitudes towards breast cancer as Anne Coulter or Fox News.
Adding to the annoyances of the book, Davies and White seem to have an anti-abortion agenda as well, and the issue of abortion pops up repeatedly throughout the book in odd places. It turns out Frances Collins, another BRCA1/2 researcher and current director of the National Institutes of Health, is also anti-abortion. They all seem concerned that BRCA+ women will start aborting BRCA+ fetuses, because clearly women can’t be trusted to make sound ethical decisions about their bodies and their fetuses. This fear has not panned out over the last 17 years at all.
There are more problems with this book, but I’ll spare you the details. To summarize: Breakthrough sucks and is annoyingly anti-feminist. Learn from my mistakes and don’t read it. It’s a waste of time.
Andrea over at Brave Bosom has a post about labels in the BRCA+ community: “advocate” versus “activist,” “feminist,” and “previvor.” I’ve already talked about my hesitation to use the “previvor” label, but I realized that despite the fact that this is a feminist BRCA+ blog, I have not yet posted about why the HBOC community needs feminism.
First, some twentieth-century American history (courtesy of Barron H. Lerner’s Breast Cancer Wars).
Decade after decade, surgeons continued to disfigure women’s bodies with the Halsted mastectomy despite the fact that it was not saving lives. Women who received Halsted mastectomies did not have better survival rates than women who did not have the surgery. Still, doctors continued to push the procedure. Surgeons were the macho heroes of the medical world and the Halsted was the masterpiece that showed off their skill. Nevermind that it left women physically and psychologically scarred or that medical evidence indicated that the Halsted mastectomies were unnecessary or unsuccessful.
At that time, doctors didn’t even have to tell women their true prognosis, and thanks to infantilizing paternalistic attitudes within patriarchal medicine, many doctors thought women couldn’t handle the truth about their health, so they just didn’t tell them. In fact, women were rarely even offered the opportunity to make choices about whether or not to have surgery: if breast cancer was suspected, a woman was put under anesthesia for the biopsy and if the biopsy found cancer, then a mastectomy was immediately performed without consulting the patient.
Nowadays, women diagnosed with breast cancer have more options. They can have lumpectomies. They can have chemotherapy or radiation. They can choose from a range of mastectomies–skin sparing, nipple sparing, simple, etc.–and reconstructive procedures. They make these choices through informed consent. They have a variety of resources, support groups, and networks to turn to. They can often tell their stories without shame or censure. You can thank feminists for all this (not that anyone ever does).
I don’t mean, of course, that feminist doctors invented these procedures. I mean that feminist activists spent decades demanding that doctors stop needlessly hacking into women’s bodies with the Halsted mastectomy and seek alternatives based on objective medical evidence like randomized clinical trials. Feminist activists were relentless in advocating for women patients. And when the deeply conservative medical community resisted change, feminist activists created their own networks to share information, lobby, and provide support. In this way, the modern breast cancer community emerged out of the Women’s Health Movement of the 1970s and 1980s, which was itself a product of Second Wave Feminism.
In recent years, the feminist roots of breast cancer activism are often overlooked, as conservative anti-feminist organizations like the Komen foundation and other pinkwashers have co-opted and sanitized feminist rhetoric and iconography. At the same time, pink ribbon culture pushes conventional gender roles on survivors and previvors alike, often ignoring the experiences of women who don’t fit the optimistic breast cancer warrior model (women of color, the poor, queers, etc.). The medical industry remains a strongly patriarchal establishment. There is much work to be done.
At the moment, mainstream feminism largely ignores the issues BRCA+ women face. This leaves BRCA+ feminists like me out in the cold: without a feminist discourse to guide our thinking on HBOC and alienated by the conventional gender roles and pinkwashing endemic to the breast cancer community in general and the BRCA+ community in particular. Thus this blog. Still, feminists were among the earliest commentators questioning the ethics of genetic testing and they have been at the forefront of the fight against gene patenting for many, many years. Most BRCA+ women already believe in the feminist tenet that a woman has the right to bodily autonomy and integrity.
Despite the fact that I firmly believe the BRCA+ community needs feminism, I highly doubt the feminist label will catch on there. It is rather notoriously the other “F word.” Too many women strive to distance themselves from it. They think feminists are shrill (heaven forfend!). They think feminists hate men. They think we already live in a world of gender equality (ahaha!). They don’t know women’s history well enough to know what feminism has already done for them. Nonetheless, most women enjoy rights that feminist activists fought decades to win: things like voting, having credit cards in their own names without their husband’s consent, and having legal recourse for sexual harassment, sexual assault, stalking, etc. In other words, women of all political backgrounds have benefited from the hard won gains of feminist activism, even women who have dragged their heels to resist change. That’s true within the breast cancer and HBOC communities as well.
I am frustrated by the lack of an explicitly feminist discourse on BRCA mutations and the absence of an explicitly feminist BRCA+ support network. I often feel out of place within the BRCA+ community, which seems to suffer from the same problems with pinkwashing and relentless optimism as the larger breast cancer community. There must be other BRCA+ feminists out there, but I haven’t found them yet. I hope that with this blog some of them will find me.