Pelvic exams are pointless, like everything else.

Lisa SimpsonThree things we already knew:

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:

RadicalMastectomy

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.

 

Feminism and the BRCA+ Community

url

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.

The BRCA+ Bookshelf

There are two books that lay out what the mutations are, what the risks are, and what the options for risk reduction are: Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny by Sue Friedman, Rebecca Sutphen, and Kathy Stielgo and Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer by Joi Morris. If a BRCA+ woman decides to explore her surgical options, Kathy Stielgo’s The Breast Reconstruction Guidebook is priceless. These three books are required reading for BRCA+ women, and gene therapists should hand out copies of both these books to women who’ve just tested positive for a deleterious mutation (as opposed to the flimsy photocopied brochures featuring soft-focus women looking thoughtfully into the middle distance that I received with my results).

In addition to these informative medical books, there is a whole niche industry devoted to the BRCA+ memoir. I realize that many women find reading and writing these memoirs to be an emotionally satisfying experience. But I don’t. I’m not particularly interested in reading about individual women’s experiences of being BRCA+ in book form. There are many great BRCA+ blogs and youtube channels that detail individual experiences, and I’d rather read those. YMMV.

Instead, I’m looking for a big picture perspective on BRCA mutations. I want to know about the history of their discovery, about the scientists who found them, how they fit into the larger breast cancer medical industry and the history of breast cancer. I want to know what previous generations of women faced when they received a breast cancer diagnosis, how far we’ve come since then with medical advances, and how far we haven’t come since then. I want some hardcore cultural analysis of BRCA mutations, the risks women face, the environmental factors that contribute to growing rates of breast cancer, the surgeries available, and the pre- and post-surgery risky body. I want critical treatments of BRCA+ discourse and the BRCA+ community. And yes, I want to see feminist takedowns of the patriarchal medical industry as it relates specifically to high risk women. Whereas memoirs take an intimate look at the lives of women with mutations and their struggles, I want to contextual my own struggles within larger social, political, and economic spheres.

So far, my attempts to locate this sort of analysis haven’t fared well. Gayle Sulik’s Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health and Samantha King’s Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy take a good look at the many problems with pinkwashing and dominance of Komen in the breast cancer community. I recommend both of them. As far as history goes, Barron Lerner’s The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America did a really good of laying out the heartbreaking realities that women with breast cancer have faced in the United States since the late nineteenth-century, but the chapter on BRCA mutations and gene testing was off-putting (that’s a whole other post).

Maren Klawiter’s The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism is next on my To Read list. Other suggestions are very welcome.