Screening for ovarian cancer: Where’s the outrage?

In September the United States Preventive Services Task Force, a panel of medical experts, concluded that tests to screen for ovarian cancer do more harm than good. As a result, insurers will not be required by federal law to pay for such tests.

And the announcement was met with near silence.

Why was this recommendation greeted with such malaise when the same panel’s earlier and similar conclusions about prostate cancer screening  and breast cancer screening (in women less than 40 years old) created a tsunami of criticism? Here are a couple of reasons, one morbid and the other psychological.

First, ovarian cancer is often a fatal disease, often rapidly so. That means there is not a crowd of ovarian cancer survivors around to lobby for more aggressive screening. By contrast, prostate and breast cancers are often quite slow-growing, so slow in fact that many experts assert that many of these cancers are best left to their own devices. This slowness, in fact, is what has made it so difficult to assess the benefits of screening for these cancers.

When people live for many years, even decades, following a cancer diagnosis, it is hard to conduct trials large enough to find any kind of survival benefit to screening or early treatment. In case of ovarian cancer, however, a truly effective screening test – if it saved lives – would be relatively easy to establish. So it’s clear that our lack of a good screening test is not simply the result of underpowered clinical trials. We just don’t have anything that works. And we also don’t have a whole lot of ovarian cancer survivors, convinced that the screening test saved their lives, who can lobby for more aggressive screening.

But we do have surviving loved ones, who’ve seen the tragic consequences of an ovarian cancer diagnosis. Why haven’t these survivors been motivated to push for more screening?

I expect it is because ovarian cancer screening has never been routine, and no public service announcement campaign was ever designed to cajole women to get tested.

Once people are used to getting something, they resist efforts to have it taken away. For years, experts told 40 to 50 year old women to get mammograms. Who can blame people for being upset then, when these same experts changed their minds? The same goes for hormonal replacement therapy for post-menopausal women. Physicians promoted these drugs as “twofers” for a long time, saying that they would treat hot flashes at the same time as they protected women’s hearts from coronary artery disease. Then when a randomized trial showed that hormonal replacement therapy actually raised the early risk of heart attack, women were understandably upset.

My view is this: I trust the experts – in this case the Task Force – to do a careful job of weighing evidence. When they conclude that screening tests ought to be standard of care, I take them at their word, all the while recognizing that when more evidence comes in, they may change their minds.

After all, that’s how science works.

Peter Ubel is a physician and behavioral scientist who blogs at his self-titled site, Peter Ubel and can be reached on Twitter @PeterUbel.  He is the author of Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together.

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  • margo

    Interesting there are no reliable screening tests. I wonder if there are reliable ways to screen if there is money….

    • PcpMD

      Not sure what you mean by that. There are other conditions that have

  • http://www.facebook.com/dayna.gallagher.9 Dayna Gallagher

    “Why haven’t these survivors been motivated to push for more screening?”

    This insidious disease has not been politicized. Not yet politically correct to do so.
    In my opinion…the leftist feminists have not yet caught on.how precarious this one is. They are blinded by their imprudent acrimony.generated at their foes, the “male dominated” medical profession.

    • Molly_Rn

      As a leftest feminist, I can tell you that you are being rediculous. If you hate us than just say so but don’t give us that BS about hating male physicians. I am happily married to a male physician. This is about cancer, and a really nasty one at that. I have a feeling that because it is usually caught late and is so rapid growing and metastasis is so fast that the patient dies quickly and horribly and their family is frozen in grief. I have a dear friend dying right now of ovarian cancer who would have been tested if it had been routinely available and perhaps would be living a healthy good life.

      • http://www.facebook.com/jewel.markess.3 Jewel Markess

        If you are married to a physician you should be able to understand that catching something early doesn’t mean it’ll make a difference. Often the whole reason something is caught early is because it’s so slow growing it wouldn’t have spread in one’s lifetime anyway. Really, did you husband explain to you the concept of over-diagnosis? I am sorry about your dear friend, but if her cancer is aggressive, chances are no screening test would’ve helped her because screening tests in general tend to find slow-growing cancers.

        • Molly_Rn

          I think after 20 years working as a critical care nurse in ICU/CCu that I understand the concept of over-diagnosis. Funny buy my ED director husband believes in testing for ovarian cancer and prostate cancer. You are speaking only for yourself. Watch your generalities, because you are often wrong and in this case you are.

  • EmilyAnon

    Maybe the CA125 hasn’t proved itself as a screening tool, but in my case it caught a recurrence when used as a surveillance tool after being diagnosed with stage 3 ovarian cancer, treated with surgery and chemo.

    After 3 years NED, no symptoms, then a sudden jump from single digits to 97. My oncologist took another test and sent it to different lab, results were still high. I then was given a CT which showed metastasis in lymph nodes. A second surgery, more chemo. That was 6 years ago. Would I still be here if I didn’t have routine CA 125 testing? I’ll be a 10 year survivor at the end of the year. My hope is that the cynicism expressed here doesn’t cloud it’s usefulness for many patients.

    • southerndoc1

      Nobody’s criticizing the appropriate use of the CA 125 to monitor paitents with ovarian cancer. No cynicism, just the facts, ma’am.

    • Alison Galvan MD

      CA 125 is used to monitor recurrence of ovarian cancer. I don’t believe the author is talking about that. CA 125 is not a good screening test for ovarian cancer, however.

  • Jay Vance

    Before I make my comment, let me state that my wife is coming up on 3 years post-surgery for Stage 3C ovarian cancer. The fact that it was a slow-growing variant is big reason she’s still alive, that and a fantastic gyn-onc team at University Hospital in Tucson, AZ headed up by Dr. Ken Hatch, not to mention a lot of prayer. The point is, the issue of ovarian cancer is near and dear to my heart, not just a hypothetical thought exercise.

    Having said that, I guess my question with all due respect to Dr. Ubel is, what part(s) of the evidence on which the recommendation is based do you disagree with? I have read the entire website (http://www.uspreventiveservicestaskforce.org/uspstf12/ovarian/ovarcancerrs.htm). The fact is that a relatively tiny number of women get ovarian cancer in the U.S. every year. The fact is that there are no effective screening methods at this point. If the studies cited by the panel are accurate, a relatively large number of women undergo unnecessary and potentially dangerous surgery due to false positives from the aforementioned ineffective screening testing. It’s a tragedy that women die from ovarian cancer, but as things stand right now, what exactly is it that we’re supposed to be outraged about?

    By no means am I suggesting that we shouldn’t screen for ovarian cancer. As my wife and I learned the hard way, there is a constellation of symptoms that certainly should alert a woman that something’s not right, and at that point it’s time to start screening and testing and poking and prodding until the cows come home. But screening the entire nonsymptomatic female population of the U.S. for ovarian cancer is simply not the best use of our shrinking healthcare dollars, it’s just that simple.

    By the way, according to the USPSTF report, there is at least one new ovarian screening test being developed, and that’s great news. If the day comes when a reliable, reasonably priced screening test for ovarian cancer is available, and the USPSTF or other influential entities ignore it, THAT’s when I think we need to start talking about outrage. But not today.

    • http://www.facebook.com/profile.php?id=100000598150026 Mar McFadden

      Jay,

      Thank you for addressing the issue of unnecessary and horrible surgery for a rare but virulent disease.

      I was a victim of cancer hysteria when a surgeon removed all my sex
      organs knowing I didn’t have ovarian cancer, only a large cyst, because he told me that at 50, this was standard procedure. Even without any family history of the disease and no other symptoms, he told me i “might have gotten cancer in ten or twenty years.” I was shocked at his ignorance and arrogance.

      I thought I was giving permission for the surgery only if cancer was found, but apparently the law says signing the consent form is the same as my demanding that the surgery be done regardless of usefulness or appropriateness.

      Who does radical surgery and keeps someone under for two hours unless there’s a reason?! A lot of surgeons do. Remember health insurers pay by procedure; the more a surgeon does, the more he & the hospital get paid.

      The surgery is horrific in ways no one tells you. Aside from the sexual dysfunction gynecologists don’t talk about, they never mention the nerve damage, the skin fragility, the internal and external scarring, the dramatic increase in falls, the death from heart attack & the chances of getting Alzheimer’s or early onset dementia. The surgeon said to me that he was surprised that at 50 I was interested in having a sex life. After all, I wasn’t going to have children, and he left what he thought would be “enough” of my vagina for my boyfriend, so why was I upset? No other women get upset. “You are unusual,” he said. At least four other doctors agreed with him.

      The thing is, the rate of ovarian cancer hasn’t budged in 50 years. It’s still largely affects older women, with more than half the cases in women over 70 and more than half of those are women over 80, for whom the operation and chemo is more destructive than the disease. Despite the large number of surgeries to remove women’s sex organs – 600,000 hysterectomies of which 310,000 also have oophorectomies (removal of ovaries) – only about 1/3 of the women with ovarian cancer survive.

      The high mortality rate not just that there are no screening tests, it is that the nature of some forms of cancer, like pancreatic and ovarian, in endemic and invasive. These diseases use and corrupt basic systems the body needs, so are hard to distinguish from normal processes and almost impossible to fight.

      Both ovarian and pancreatic cancer affect the endocrine system. Other cancers use the nervous system as highways to transport the diseased cells and collude with healthy cells. Everyone who manages to survive these diseases has to live with a host of other things brought about because of the nature of the “cure.”

      Maybe our metaphors are undermining our research. If cancer is a corruption of normal cellular function, then perhaps the way to stop it, to heal the body isn’t to further damage it, but to use the same mechanism that goes awry to repair itself. Otherwise, we are fighting ourselves. There is no winning to be had.

  • http://www.facebook.com/marilyn.shively.5 Marilyn Shively

    I’ve been outraged for years! there is a simple painless test to screen for ovarian cancer; several women i know had the test because of an abnormality and ovarian cancer was detected and caught early with a good outcome. Why isn’t this test used for screening? i know, i have heard all the negatives; because there are false positives. just because the test may be positive doesn’t mean you run right to the operating room. once the test is deemed positive then there are other tests that can be done like CA-125 and a good physical exam to try and rule ovarian cancer in or out. i can’t believe that there is this test available and isn’t utiilized to screen women for ovarian cancer. I am outraged.

    • http://www.facebook.com/jewel.markess.3 Jewel Markess

      Have you thought that their cancer was caught early specifically because it was not aggressive to begin with? If these tests worked, the studies would’ve showed that fewer women died from ovarian cancer in screened vs non-screened group. Personal anecdotes isn’t data.

      • http://www.facebook.com/marilyn.shively.5 Marilyn Shively

        women get mammograms to catch cancer in its early stages so why not a pelvic/transvag ultrasound to do the same thing? I know there have been studies that purport that mammograms don’t save lives. I know the downside of mammograms; the mammo picks up things that wouldn’t have been detected years ago and then women are subjected to biopsies and the angst of wondering if they have cancer. I understand that. It seems to me that if a screening test is questionable there are options in how to deal with it, like what is the next step? i think it takes thought and time and physicians are too busy to devote that kind of time; then there is the cost of doing the testing which is expensive. Ovarian cancer is so deadly that it just seems to me that the medical field needs to think out of the box in trying to save lives. Also, how large was the study that you refer to.

  • Molly_Rn

    Currently loosing a dear friend to ovarian cancer which is a miserable disease and next to no survivors. Yes, we need to screen for ovarian cancer and insurance should pay for it.

    • http://www.facebook.com/jewel.markess.3 Jewel Markess

      Really? I guess the fact that there is NO EFFECTIVE TEST doesn’t deter you? Yes, ovarian cancer is a terrible disease. But the studies showed that screenig for it DOES NOT WORK. Even with screening tests that are routinely done, they tend to catch slow-growing cancers, some of which wouldn’t have spread in one’s lifetime. Aggressive cancers tend to kill anyway. If screening for ovarian cancers had actually saved lives, then the studies would’ve showed it. Of course, we all like to think we can “do something”, but just doing something for the sake of doing something often causes more harm than good.

      • Molly_Rn

        I have lived long enough to see studies come and go. Don’t shout it is rude. I still believe that the test can and does catch cancers that might be stoped or at least good, loving, productive time given the patient. Try to control your temper and intollerance for others opinions.

  • SBornfeld

    If the USPSTF had the courage of their convictions, wouldn’t they be counseling not only against screening (since it leads to harmful surgery), but also against treatment other than palliation?
    They have said (in effect) that there is no advantage to early detection of ovarian or prostate or pancreatic cancers at any age; no advantage in younger or older women for cervical cancer.
    (As a dentist, I note that the Task Force has no recommendation regarding screening for oral cancer, though they courageously allow that “…There is also no evidence of the harms of screening…” I am relieved, but I am mystified.)
    There is nothing wrong with observing a lack of evidence for cause-specific advantage. The problem is with the out-of-context authority others will doubtless claim for these findings.
    So now we “ask our doctors” for recommendations related to our specific clinical situation. My fear is that the doctors will be asking the insurance companies.

    • southerndoc1

      USPSTF does not have anything to do with evaluating treatment modalities.

      • SBornfeld

        Of course they don’t. They just assess “harms” of treatment.

  • SBornfeld

    If you believe screenings are ineffective, why would you encourage patients to get them?

    • Alison Galvan MD

      I didn’t say that I would encourage all patients to get them, but if a patient specifically requested an order for the tests and was willing to pay out of pocket, I’d write the order. I suppose when I used the word “encourage” I misspoke.

  • doc99

    Since it’s now thought that papillary serous ovarian cancer begins in the tube, some groups are working on incorporating some markers, DNA, etc into the pap smear with some recent success. Of course we might have to consider reinstituting the annual pap smear but that is a different conversation.

  • doc99

    It’s also curious that this august body promulgating edicts on cancer screening has no oncologists.

  • katerinahurd

    According to your opinion, screening for ovarian cancer is a futile medical procedure because more harm than good is done, an inability to demonstrate any benefit via empirical methodology and insufficient numbers of survivors affected by this form of cancer to lobby for more effective screening. Can you elaborate why you believe more harm than good is done by current screening methods for ovarian cancer.

  • Dorothy Erlanger

    Check the science, not the hysteria. CA 125 has been shown in long term large scale studies to do more harm than good when used as a ‘standard screening’ tool. False positives (MANY) result in biopsies and unnecessary surgeries – morbidity (problems as a result of the procedures) is way out of line with any imagined benefit.
    Other facts:
    1) Many women have ovarian cancer without an elevated CA 125. Hence, they would be falsely secure that they are safe even with other (true) ovarian cancer symptoms
    2) CA 125 can be elevated with an abdominal infection, or even a totally benign circumstance.

    CA 125 is a good, though imperfect, tool in tracking potential relapse. In that area, it’s still the best we have.

    Dorothy Erlanger
    Ovarian Cancer 3C survivor/tnriver (11 years)
    Patient Advocate, Gynecologic Oncology Group