7 Things Doctors Wish You Knew About Home Cervical Cancer Tests

At-home seems easier

There are many reasons someone might put off getting a Pap smear: There’s taking time off work to go to the doctor, the often long wait to be seen, the nerves and stress that can come with getting any test done, and the exam itself can be uncomfortable (ugh, stirrups). So it may not come as a complete shock that many women skip this potentially lifesaving test. According to a 2019 Mayo Clinic study, fewer than two-thirds of women ages 30 to 65 are up to date with their cervical cancer screening. And the stats are even worse for younger women: Slightly more than 50 percent of women in their 20s are up to date.

This is not a test you want to skip: About 13,000 women will get a diagnosis of invasive cervical cancer this year, and more than 4,000 will die from the disease, reports the American Cancer Society. While deaths from cervical cancers have declined drastically since Pap smears became standard, the test can’t catch cancer in women who don’t get screened.

One potential solution is to make testing even easier by creating at-home kits. They’re promising: A 2019 study published in JAMA discovered that sending women at-home tests increased screening by 50 percent.

There are a number of DIY tests on the market today, but should you go the at-home route? Experts weigh in on what you should know first.

The source of trouble: Human papillomavirus (HPV)

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First, you should know that HPV is incredibly common. So common, in fact, that about 79 million Americans are currently infected with the virus, according to the CDC.  There are more than 100 types of HPV, and certain ones are sexually transmitted and have been linked to a higher risk of cancer. “So many people get HPV and there are so many types of HPV because it’s just a wart virus” says Mark Schiffman, MD, senior investigator in the Division of Cancer Epidemiology & Genetics at NIH’s National Cancer Institute. “People have wart viruses on their skin, their feet, all over, and cervical cancer is pretty much a wart virus infection of the cervix. There are types of HPV that, if they are not controlled by the body—which they almost always are—then they are risk factors for developing pre-cancer, and that in turn can develop into cancer if not treated. The goal of screening with anything, Pap smears or HPV testing or both, is to find pre-cancer.” The at-home tests are designed to find the most troublesome versions of HPV—ones that are most often linked to cervical cancer. (Read one woman’s story about getting HPV at age 53.)

How often should women get screened?

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The government group that sifts the evidence and sets guidelines for testing—the United States Preventive Services Task Force (USPSTF)—advises women between the ages of 21 and 29 get screened for cervical cancer every three years via Pap smear. After the age of 30, there are options: Screening every three years with Pap smear alone, every five years with high-risk HPV testing alone, or every five years with co-testing, in which HPV testing and a Pap smear are performed together.

To be clear: A positive HPV test doesn’t mean you should automatically panic. “Detecting HPV is not detecting pre-cancer, because the great majority of HPV infections are benign and will go away on their own,” says Dr. Schiffman. But certain high-risk strains are cause for follow-up testing because they are more closely linked to the development of precancerous cells.

How at-home tests work

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There are many at-home HPV tests currently being sold directly to patients online, such as Nurx, Everlywell, and LetsGetChecked. They work much like the test your doctor performs. You use a swab to insert into your vagina to collect a sample of cells; you drop the swab into a tube and then mail it to a lab for testing. You’ll be alerted of your results and next steps based on whether some of those high-risk HPV strains turn up in your sample. Just so you know, most of the tests aren’t meant for women who’ve had abnormal Paps in the past or have a history of cervical cancer. And most at-home tests indicate they’re for women over 30, which dovetails with the USPSTF’s guidelines.

What the science says

The JAMA study indicates that self-testing can help women adhere to screening guidelines. “We wanted to look at strategies to increase screening participation in women who are overdue for a screening and difficult to reach,” says lead study author Rachel Winer, PhD, professor of epidemiology at the University of Washington School of Public Health. “There are studies that have been done in Europe and Australia that have shown if you mail self-sampling kits for HPV to women who are overdue for screening, the uptake of screening is higher than just sending them another invitation to come in for a Pap screen in the clinic.” Plus, says Winer, studies have shown that women performing self-collection with a swab at home can be just as effective as a sample collected by a clinician—though Pap and HPV tests performed by a clinician are still the gold standard.

At-home testing limbo

While the science appears favorable for at-home testing, at-home screening for HPV and cervical cancer has yet to get a green light from the Food and Drug Administration. “How do we advise people about self-sampling? We don’t,” says Dr. Schiffman. “We only advise people on things that have passed the rigor of FDA approval.” Even if your at-home test uses an FDA-approved swab (as some do) and sends it to be processed at the same lab your doctor’s office uses, the whole process of you collecting a sample yourself and mailing it in is not approved by the FDA as adequate for cervical cancer screening.

“[At-home testing] has a lot of evidence behind it, but we’re waiting for it to be approved,” says Debbie Saslow, PhD, managing director of HPV and women’s cancers at the American Cancer Society. As Saslow points out, it’s not just about approving the test but approving a whole series of strategies and protocols for how to handle self-screening, including what women should do with a positive result. “We need to make sure that there’s an infrastructure to support this,” Saslow adds. “We do colorectal stool sampling at home, as well as other tests at home, but you still need to make sure that the tests get sent to the provider, that the results get sent back, and that there’s follow-up if needed.” Follow-up is an issue: In Winer’s study, 30 percent of the women with positive HPV results failed to come in for more testing.

Should you use at-home HPV screening?

If you follow instructions and you’ll act upon a positive result, you could be a good candidate. Winer points to research demonstrating that women who follow the self-swab instructions get a good sample.

“There are women who are not getting screened at all,” says Saslow. “And for many of them, it’s because of the discomfort. A lot of women will go to a doctor or clinic for other health care but refuse to get cervical screening, so if self-collection can get those women screened, that’s going to be a huge benefit. There’s also the likelihood that a lot of women who are already getting screened will prefer to do their own, just like a lot of people prefer a stool test instead of going in for a colonoscopy. It’s a personal choice.” (Here are 29 things doctors wish you knew about cervical cancer.)

What to look out for when choosing a kit

If you still want to test at home (without the FDA’s sign off) make sure that your HPV kit is only testing for high-risk strains (tests that include low-risk strains may produce positive results that will worry you unnecessarily). You’ll also want to ask about where the tests are processed and how you’ll receive your results. And make sure you follow the instructions carefully. For instance, Robert DeBernardo, MD, a gynecologic cancer specialist at the Cleveland Clinic, points out that your test “needs to get back and processed within a certain time period.” Otherwise, the results may be compromised.

It’s also a good idea to have a plan in place before you get the results. “The critical questions are, ‘What do I do if it’s positive? What do I do if it’s negative?'” says Dr. Schiffman. “If you’re negative, you’re reassured, but that reassurance has certain parameters: ‘How long am I reassured for? How good a test is it that I just took?’ For that reason, it’s good to have an expert between you and whoever’s selling you the test.”

Still see a doctor no matter what

“I worry more that if women do testing on their own, that is one more barrier to someone establishing a relationship with a primary healthcare provider because that is really important,” says Lois M. Ramondetta, MD, a professor at The University of Texas MD Anderson Cancer Center Department of Gynecologic Oncology and Reproductive Medicine. As many doctors pointed out: Visiting your gyno yearly for a checkup is about so much more than just a Pap smear. “Women should still see a gynecologist every year,” says Dr. DeBernardo. “There are a lot of issues that are dealt with in the gynecology office: family planning, STD screening, sexual health, menopause symptoms, urinary incontinence. There are so many things that gynecologists do, so it’s a lot more than a Pap smear.” The bottom line: Because at-home HPV testing is not yet FDA approved, check in with your doctor whether you choose to screen at home or not so you’re supported—regardless of the results.