The Ellen Show broadcasts potentially harmful information about ovarian cancer screening

Ethical OB/GYNs everywhere sighed heavily when they realized from the action on their Facebook and Twitter feeds that the Ellen Show broadcasted 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.

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 Force states 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-payments 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 likely 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 indicated, 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 diagnostic 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 learned too much about evidence-based medicine or medical Internet hygiene.

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