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.

 

Oophorectomy Sucks

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.

HOWEVER.

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.

  • We need to keep in mind at all times that BRCA1 and BRCA2 are very similar but not identical.
  • We must demand prevention management strategies that take into account these differences.
  • We need to demand more research on the risks associated with particular mutations within BRCA1 and BRCA2.
  • We need to demand personalized risk estimates based on our individual mutations, family histories, situations, and values.
  • We need to acknowledge that ovarian function is important for a woman’s psychological and physical health even after her childbearing years and even a woman who does not want to have (more or any) children may have valid reasons for ovary conservation.
  • We need to demand surgical alternatives to oophorectomy.
  • We need to demand alternatives to surgical risk reduction altogether.
  • We need to demand better ways to manage surgical menopause.
  • We need to remember that surgery is just one strategy for risk reduction and not a mandate, and that there are good reasons for choosing surveillance or chemoprevention.
  • We need to stop implicitly blaming women for not doing “enough” to prevent their own cancers, whether that be not exercising more or delaying oophorectomy.
  • We need to acknowledge that quality of life is incredibly important.
  • We need to understand that not all doctors agree about timing oophorectomy and we need to familiarize ourselves with these medical debates.
  • We need to reject one-size-fits-all approaches to risk reduction and need to make well-informed, medically sound decisions for ourselves.
  • We need to stop being so matter-of-fact about tearing out healthy ovaries and sending women into surgical menopause. It is, at best, the lesser of two evils.