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Ellen Pompeo gives terrible advice about ovarian cancer screening on The Ellen Show

Ethical OB/GYNs everywhere sighed heavily this evening when they realized from the action on their Facebook and Twitter feeds that The Ellen Show broadcast incorrect and potentially harmful information about ovarian cancer screening to almost 4 million people. Millions more will likely hear about it on social media.

Ellen Pompeo, who plays a doctor on the television show Gray’s Anatomy, decided to play doctor in real life and used her celebrity platform to recommend that all women get pelvic ultrasounds to screen for ovarian cancer.

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Sigh.

She’s wrong.

The segment started out as a fundraiser for breast cancer research. Two women won a chance to walk with Ms. Pompeo to Starbucks. After they shared their stories about why raising money for breast cancer/meeting Ms. Pompeo was important to them, the actor shared something she had just learned.

She said, “All it takes is a simple ultrasound” to screen for ovarian cancer.

She also added, “When you go to the doctor health insurance won’t pay for the ultrasound, so make sure you ask for the ultrasound, because ovarian cancer is not detected otherwise.”

Insert angry emoji

It is frustrating to see someone with such influence use it to spread such incorrect information.

I don’t blame Ellen DeGeneres, the segment was about breast cancer and Ms. Pompeo’s interjection on ovarian cancer seemed unscripted. I also believe Ms. Pompeo was speaking earnestly, but well-meaning misinformation is still misinformation and it harms just the same.

Ovarian cancer affects approximately 20,000 women each year in the United States. A woman’s lifetime risk of developing ovarian cancer is 1 in 75. We OB/GYNs know it is a frightening disease — the 5 year survival is 30-40%. Unfortunately, 65% of women are diagnosed when they have stage III or IV ovarian cancer and for these women the survival rate is 18%. We have all seen patients die from this and wished we had been able to do better.

That we can not yet screen for ovarian cancer — meaning identify it before there are symptoms and in the early stages when the odds of survival are better — is not for lack of trying. There have been multiple studies and experts have toiled over the data to try to come up with the right recommendations for women.

This is what the The American College of Obstetricians and Gynecologists (ACOG)
and the Society of Gynecologic Oncology conclude:

Currently, there is no strategy for early detection of ovarian cancer that reduces ovarian cancer mortality.

The use of transvaginal ultrasonography and tumor markers (such as CA 125), alone or in combination, for the early detection of ovarian cancer in average-risk women have not been proved to reduce mortality, and harms exist from invasive diagnostic testing (eg, surgery) resulting from false-positive test results.

The US Preventative Services Task Forcestates the following:

The USPSTF recommends against screening for ovarian cancer in asymptomatic women. (D recommendation) This recommendation applies to asymptomatic women who are not known to have a high-risk hereditary cancer syndrome.

And the American Cancer Society:

There are no recommended screening tests for ovarian cancer for women who do not have symptoms and are not at high risk of developing ovarian cancer. In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer in women at average risk

This was NOT hard information to find.

The harm with ultrasound screening for ovarian cancer in women at average risk is several fold:

  • Many women report pain from transvaginal ultrasounds.
  • Women will be falsely reassured. That is unethical and cruel
  • Some doctors will simply give women the tests they request. If health insurance happens to pay then the unnecessary test adds to the overall cost of the insurance. Even with coverage many women will pay $100 or more in co-payment for an ultrasound. Women without insurance will pay much more. Maybe actors have that kind of money, but the average American does not. Especially not for an unindicated test.
  • Some doctors will be ethical and stick to the screening guidelines — meaning no ultrasound. Women who believe Ms. Pompeo may now feel that their doctor is withholding something from them or dismissing them when what they are getting is evidence based medicine. This could lead to friction and a fracture in the doctor patient relationship.
  • Many women who get these unindicated ultrasounds will have findings that are likley benign but it will take more (expensive) testing to prove that or even possibly surgery — surgery that would never have been needed if it were not for the unindicated ultrasound.

Why Don’t Ultrasounds Work for Screening?

We now believe that the most common ovarian cancers originate in the fallopian tube, so when disease is identified on the ovary it has already spread — meaning it is too late for screening. Some experts estimate that by the time the cancer has spread to the ovary it may have been present for 6-7 years.

Telling the difference between a cancer and a benign lesion on the ovary can also be hard.

Ovarian cancer is typically very aggressive.

Higher Risk Women Need Different Care

Some women are genetically at higher risk for ovarian cancer. Anyone with a personal history of breast or colon cancer or a family history of breast, ovarian, or colon cancer should speak with their doctor who can take an appropriate history and order testing and refer, if indicted, to a genetic counselor. If they test positive for a genetic marker for ovarian cancer then there will be specific recommendations for monitoring and/or treatment.

Low Risk Women

Symptoms of ovarian cancer are vague and include persistent bloating, pelvic pain or abdominal pain, and feeling full quickly after eating. They are not specific, meaning most women with these symptoms do not have ovarian cancer. A woman with a new onset of these symptoms (meaning within past 12 months) that last 12 days a month may need to be evaluated for ovarian cancer. That is called a disgnostic test. If you have these symptoms tell your doctor.

What Now?

I believe Ms. Pompeo acted in good faith, but that doesn’t make her information correct and undoing what she said will be hard. There is a phenomenon called the illusory truth effect — the more you are exposed to incorrect information the more likely you are to believe it. Even one exposure to incorrect information can prime you to believe fake news, so the potential for harm from a short segment like this is real.

Celebrities have great influence on health care decision-making and they should be mindful of that privilege. Information about ovarian cancer should come from a doctor, not from an actor who plays a doctor on television. I guess from her 14 years on the show Ms. Pompeo hasn’t leanred too much about evidence based medicine or edical Internet hygiene.

No woman is ever served by misinformation. I hope The Ellen Show sets the record straight.

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Discussion

41 thoughts on “Ellen Pompeo gives terrible advice about ovarian cancer screening on The Ellen Show

  1. Thanks for this. How do diagnostic investigations differ from ultrasound or other screenings if there is no efficacy demonstrated in the latter?

    Posted by palfreyman1414 | October 24, 2018, 2:19 am
    • The difference between diagnostic and screening tests depends on why the diagnostic test is being done. It might be the same test in some cases (like TVUS). Screening tests are done for patients with nothing wrong, no symptoms, and no reason to be concerned. Diagnostic tests are usually the opposite. Thus, if a suspicious result emerges from a diagnostic test, there is a high probability that further testing, including the possibility of biopsies or surgery, will be advised. Bryan S Jick, MD, FACOG.

      Keep up the good work Dr. Gunter !

      Posted by Bryan Jick | October 24, 2018, 5:46 am
  2. Sigh

    Posted by Patti Reynolds | October 24, 2018, 4:11 am
  3. Dr. Jen — please watch your spelling and grammar. In today’s post you have indicted instead of indicated (& other misspellings of indicated); don’t refer to a woman as ‘they;’ a woman is ‘she.’
    Love your posts. This one is especially important.

    Posted by Susanna Levin, NP | October 24, 2018, 4:17 am
    • Hey Susanna most people just point out the typos instead of attaching judgement to it. This is a free blog and many stories like this go up quickly to try to be relevance limit the damage. 99.9% of people who comment get that.

      Posted by Dr. Jen Gunter | October 24, 2018, 5:25 am
    • I’m a ‘they’ with ovaries. This information is important for non-binary people too.

      Posted by Hikikomorihime | October 24, 2018, 8:01 am
    • The world would be a simpler place if we could embrace the term they.

      Posted by Ainsobriety | October 24, 2018, 8:46 am
    • Setting aside the question of how important perfect spelling is when disseminating crucially important information, I think the issue is Dr, Jen furiously responding without actually typing, “Pompeo, you ignorant slut…”

      Posted by Rdinnola | October 24, 2018, 9:25 pm
    • They is fine. After all, there are quite a few transmen who still have the ovaries they were born with.

      Posted by Demodocus | November 8, 2018, 9:05 pm
      • Yikes! The grammar police are out there, correcting spelling and grammatical errors when they or SHE should be minding her own business. Thoughts occur faster than we can type or write, so sometimes errors occur. If the correction software fails, then MOST IMPORTANTLY, was the idea conveyed? Was the point made? Little, minor errors are not significant, just slightly annoying to those readers who actually care about concise spelling and grammar. Get over it. Dr. Jen is doing a great service for women on her off time, when she could be doing something fun and indulgent.

        Posted by Rebecca McCaslin | November 9, 2018, 11:44 am
  4. The problem is that, for the serous carcinomas, which now appear to originate in the Fallopian tubes, we frequently see millimeter-scale primaries in the tubes in women with bulky disease in the ovaries and elsewhere. Why this is is not clear, but in order to effectively screen women for this type of cancer, we have to be able to find precursor lesions that are much smaller than the resolution of our best imaging studies. There is a blood test, CA125, which is used to follow women who have this disease, that does not pick up these tumors when they are confined to the tubes.

    The bottom line is that there is currently no way to screen for this disease.

    Posted by mdfinfer | October 24, 2018, 5:06 am
    • My sister-in-law’s suspicious Fallopian cells were detected when she was biopsied for a different problem, and in that case they also chose oophorectomy and uterus removal. Sometimes these things are found almost by accident. I’ve had somewhat conflicting advice about my symptoms from various OB-GYNs. There needs to be more of a consistent consensus among these advisory bodies’ recommendations, but things are improving…

      Posted by Sara | November 1, 2018, 8:17 pm
  5. I… I’m just baffled that people would listen to an actress before they listen to their doctor.

    Posted by andersstarmark | October 24, 2018, 5:18 am
  6. I literally *just* saw this play out on NPR’s facebook page. They posted this: https://www.npr.org/sections/goatsandsoda/2018/10/21/658798956/report-women-everywhere-dont-know-enough-about-ovarian-cancer and some doctors were arguing that it was unfair to characterize the doctor’s as “ignorant” because of the time it took the patients to get a diagnosis. They talked about how there isn’t a screening protocol for ovarian cancer and then immediately, every non-medical professional was like, transvaginal u/s!! (it was posted
    October 21 at 9:31 AM if you’re curious)

    Posted by Laura G | October 24, 2018, 6:34 am
  7. In 2003 when I was diagnosed, it was “lucky”. I had a large cyst on my ovary and when it was removed they tested it and found “Stage 1A”. No chemo no radiation just your garden-variety hysterectomy. Not fun but menopause at 43 is way better than ovarian cancer.

    Posted by Wendy Long Smith | October 24, 2018, 6:36 am
  8. Thank you for pointing this out. The limits of screening confuse a lot of us.

    (I was bothered by “unindicted,” but I understand that you were writing quickly and have no copy editor.)

    Posted by meheller | October 24, 2018, 7:28 am
  9. What is the strength of the suggestion of tubal removal instead of ligation? A few friends of mine have had that recommended in the past couple of years.

    Posted by Beth Presswood | October 24, 2018, 7:35 am
    • Tubal removal should save some lives, but there’s a good chance that it would not reduce the incidence of the disease to zero. This is being studied for high risk populations, but it is not yet clear whether or not it is safe.

      Posted by mdfinfer | October 28, 2018, 1:35 pm
  10. Are we seriously calling out typos here? Who cares? I think there is much more important information being presented here than to quibble about that.

    Dr. Jen, thank you for your informative blogs, as always.

    Posted by Jenny | October 24, 2018, 8:59 am
  11. These misinformed celebrities are keeping you busy!

    Posted by fabulouslawrencesisters | October 24, 2018, 9:20 am
  12. Thank you for this. My mother passed away from ovarian cancer less than two years ago and I have been told a number of things from various healthcare providers regarding early detection so it is especially helpful to have current guidelines. Thank you for providing relevant, legitimate resources in your article as well.

    Posted by Hilary Waks | October 24, 2018, 9:44 am
  13. It seems that over here we are currently having an action in the media (endorsed by some celebrities) to raise awareness of ovarian cancer and its untypical symptoms (the ones mentioned in the post, like bloating and feeling full). The take-away message seems to be “if you have such symptoms, you _might_ have ovarian cancer, so consult your ob/gyn”.
    The one before, if I remember correctly, was about untypical symptoms of leukaemia – and the message was the same, consult your doctor.

    Posted by Alia | October 24, 2018, 11:23 am
  14. Add another actress to the list of quacks. It should be a felony to mislead millions of people w/ false information that could cause panic, unnecessary expense, health risks, etc..Why actors and actresses pretend to be medical experts and spread pseudoscience is becoming an issue in this age of social media. Off the top of my head: Robert DeNiro and Jenny McCartney spreading the vaccine/autism myth. Gwyneth Paltrow pretending to be mother nature’s answer to all that ails women, a doctor pretending to be a scientist and starting the MSG conspiracy, which was NEVER toxic,
    another Dr., pretending to be a microbiologist, currently jailed in Europe for planting the autism/vaccine rumor and causing global panic which could turn eventually result in a global pandemic, Dr. Oz, pretending to be mother Nature’s additional answer to “natural” healing, touting endless, untested cures for a myriad of maladies, Oprah stating vehemently the curative properties of Green Tea,but, which can be toxic in large quantities according to real science, and so on. If there are others, please add to this list. Our nation has been on witch hunts, generating conspiracy theories and so on since Puritan times and instead of learning from those horrible events, the trend continues. It’s mind boggling, head shaking and the older I get, the more astounding the proclamations become. We are currently funding Political pundits and law enforcers pretending to be doctors neurologists,researchers and Scientists stating that doctors’ prescriptions are the cause of the opioid crisis, but the opioids that are ingested and killing people are a mix of various opioids with Fentanyl, which are coming into the U.S. from overseas and illegally obtained. The DEA is targeting pain management doctors instead of confronting and ameliorating the real issue, which is stopping the illegal trade of deadly drugs.The war on drugs which waged in the 80’s, 90’s and into the 00’s cost taxpayers trillions of dollars with zero results. Is it fear of well-armed, organized cartels? Is it corruption? Is it embarrassment over the results of past efforts to squelch the cartels? The news reports state that our law makers are clamping down on doctors. The real story is that many doctors are closing their practices or incurring huge legal fees to defend their vow to do no harm. Conspiracy stories to make us believe that they are solving the problem and today I read a story about a sailor stationed in San Diego died from an overdose of fentanyl laced pills. Undercover agents from N.C.I.S. had purchased thousands of these pills since Aug.,2017 from a distributor. The point of this long post is to shed light on the fact that witch hunts and conspiracy stories are beyond rampant and now fatal, due to uunfit “experts”, flimflam men, quacks, government employees following political agendas instead of solving the problem.
    How many careers must be destroyed, people injured or killed before there is a reckoning? We, as citizens, should be fed up with being misled and MUST insist that credentialed experts dispense advice and list their credentials and the universities that granted the degree and when. Reputable, factual information is vital for decision making, not opinions or feelings by pretty photogenic people, or those on a political mission. Let’s wise up and organize.

    Posted by Rebecca McCaslin | October 24, 2018, 12:45 pm
  15. Oh, how I wish I’d won that date … I could have said so much on this. Diagnostic imaging totally failed in my case. There was no cancer, but a uterus three times it’s proper weight and about double it’s proper size should have been picked up … and it was diagnostic, NOT screening. And anyone who thinks a TVUS is not “invasive” has not had one. It’s not surgical, but it’s not pleasant either! And I don’t believe the MRI was any more informative than the US/TVUS Also women should know that the symptoms listed, pelvic pain, trouble eating, bloating etc, are indicative of most uterine or ovarian anomalies and diseases, that are not cancer.

    Posted by Sheila | October 24, 2018, 4:35 pm
  16. Thank you Dr. Jen Günter for such a timely response! And either the typos are fixed already, or I’m not a great copy editor. Love your work!

    Posted by Ericka | October 24, 2018, 6:37 pm
  17. Just checked the Swedish recommendations. No evidence that ultrasound decreases mortality in ovarian cancer, so little reason to do it. And if it has significant side effects then no. Just no.

    Posted by andersstarmark | October 25, 2018, 4:28 am
  18. I was diagnosed with Ovarian cancer 9 years ago and it was detetected when my thorough young doctor had me go get an ultra sound. I was 32 years old. While he told me it was probably fibroids, that was the first step in finding my two softball size tumors on my ovalaries. It may not be standard procedure but it saved my life! Doctors make educated guesses, and not all doctors are equal. Be proactive and ask Your doctor. If he/she is set in their ways , get a new doctor, you’re paying them. -Good luck

    Posted by Toni | October 25, 2018, 9:50 am
  19. It would great if Ellen invited a Gyn Oncologist come on her show and clarify what was said. Ovarian Cancer Awareness month is September and unfortunately it doesn’t get the press that breast cancer does. Because a wonen’s ovaries don’t play a significant part on how a women looks they get forgotten. I worked for a Gyn Oncologist for 23 years and this was one of the most frustrating things about making women aware of the disease.

    Posted by Phyllis Lopez | October 25, 2018, 6:15 pm
  20. I was upset when I saw the clip, I do not like it when celebrities give any type of medical advice because most of the time it is incorrect. My mom died last year after a 6 year battle with ovarian cancer, when it was found it had already spread to her colon, and at first they thought it was colon cancer but the biopsy showed the cancer originated in her ovaries and metastized. Ovarian cancer needs to be talked about more, awareness is key. Yes the symptoms are the same as many GI issues so most physicians will not automatically jump to looking for cancer.
    Thank you for this article, I shared it along with some of my other family members

    Posted by Shannon | October 26, 2018, 4:50 am

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