Three 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:
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.