Under 40 and High Risk: What to Know About Breast Cancer Screenings
For women in their 20s and 30s who need mammograms, the experience can be daunting. Here’s what to expect.
Twenty-seven-year-old Jenna Jeffs, of Nyack, NY, is used to being the youngest person in the waiting room. After being diagnosed as BRCA1-positive at 22, and therefore at increased risk of breast cancer, she has been receiving regular breast cancer screenings since age 25. But despite simply following her doctor’s guidelines to protect her health, Jeffs’ age has made the process awkward and frustrating at times.
Once, while waiting an abnormally long time in the waiting room for a mammogram, Jeffs noticed a few women in scrubs whispering and looking in her direction. “Eventually, one of them pulled me aside and asked why I was there,” she says. “I told her that my doctor wrote me a prescription for a mammogram, but she pressed further. I answered more of her questions, but it felt like she didn’t believe me.”
Eventually the staff verified the need for a mammogram with Jeffs’ doctor, but the incident was confusing and embarrassing. “I felt like I’d done something wrong when I was just following my doctor’s orders,” she says.
As a woman receiving regular breast cancer screenings under the age of 40, Jeffs is in the minority. Only about 6% of breast cancer cases occur in women under 40, according to a report in the journal Oncology. Certain risk factors—such as family history and having a known genetic mutation that increases risk, as in Jeffs’ case—can make you more likely to develop breast cancer earlier in life, and therefore in need of earlier screenings, explains Laura Dean, M.D., a breast radiologist at the Cleveland Clinic in Cleveland, OH.
“All women are encouraged to have a risk assessment by their health care provider prior to age 30,” Dr. Dean explains. For women deemed to be at high risk, screening often begins earlier than age 40—sometimes as young as age 25 to 30, says Clayton Taylor, M.D., a breast radiologist at The Ohio State University Comprehensive Cancer Center in Columbus, OH. “Frequently this will involve mammograms as well as breast MRIs annually,” Dr. Taylor explains. Mammograms are the standard screening test for most women, but sometimes MRI is also used in higher-risk cases, per the American Cancer Society. “The exact recommendations for breast cancer screening, such as when to start and whether to use breast MRI, may be different depending on the high-risk factors. This is why it is so important to evaluate for breast cancer risk,” Dr. Taylor says.
But not everyone, even in the medical community, is aware of these guidelines, and as Jeffs experienced firsthand, high-risk women under 40 can find themselves in uncomfortable situations as they try to get the screening and care they need. “Since women are less likely in general to have cancer in this age group, a lump or new symptom may not be as aggressively pursued by the patient and/or her provider,” Dr. Dean says. “There may be additional financial or insurance challenges to overcome, especially with having a supplemental screening with MRI, in addition to standard mammography.”
What to Expect at Your First Screening
Especially if you’re young and new to mammograms, going for your first appointment can be nerve-wracking. Knowing what to expect can help you feel more at ease. “If possible, have your breast cancer screening performed at a place that specializes in breast imaging, such as a Breast Imaging Center of Excellence, and try to go to the same facility each year to allow for comparison to prior imaging,” suggests Dr. Taylor.
When you arrive, you’ll likely be asked to fill out a breast health history form, says Dr. Dean. For the exam, you’ll be asked to undress from the waist up, so wearing an easy-to-remove top is a good idea. Also, make sure not to wear any deodorant on the day of your test since it can show up as white spots on the X-ray images, says the American Cancer Society.
The mammogram itself is essentially two X-ray pictures of each breast. The technologist working with you will help position each of your breasts between the mammography machine’s plastic plates, which will flatten the breast tissue for a few seconds as each image is taken. The whole process takes about 20 minutes total. “Mammography is a very common test, and our staff and technologists are there to make the experience as comfortable as possible,” says Dr. Dean.
That said, it’s not exactly a trip to the spa—the compression can be uncomfortable or painful. Let the technologist know if you’re in any pain. One tip is to try not to schedule your mammogram for the week before your period when your breasts are more likely to be tender and swollen, the American Cancer Society suggests.
In the days after your mammogram, you should get your results fairly quickly, says Dr. Taylor. But if you haven’t heard back within 10 days, don’t assume no news is good news—follow up with your provider to confirm.
Jeffs was warned by her doctor that as a younger woman with higher breast density, there was a higher likelihood that the lab would call her back in for additional testing—and they did. In fact, Jeffs says, she has been called back in for a repeat test for every single mammogram she has had so far. “Generally speaking, younger women have denser breast tissue, which can make interpretation of screening mammography more challenging,” Dr. Dean says.
Jeffs also once needed a breast biopsy after screening, only to find out there was nothing but dense tissue. “It’s a fairly stressful and uncomfortable procedure,” she says. “It’s difficult to silence the voice in my head that says, ‘I went through all that and now I have a scar for no reason.’ But obviously there was a reason—to determine for certain that nothing was wrong, and that makes it worth it.”
Making the Process Easier
Breast cancer screenings take getting used to at any age, but when you’re in your 20s and 30s, your exposure—literally—can be a bit of a shock. “Since I started getting them when I was young, I wasn’t used to medical screenings that were quite so invasive,” says Jeffs. “I was embarrassed by the process at first—of having to fully bare myself and let a bunch of people poke and prod at me.”
Learning to shift your perspective (the medical staff is not looking at your body, they are zeroing in on cells inside your breast) can help alleviate some of that “nudity on display” weirdness that comes with many medical procedures. The other thing that might help you relax? Seeing your experience as a chance to open up to others about what it’s like being a young woman at high risk of breast cancer.
“At first, I only really discussed it with my other BRCA1-positive family members, but now I talk openly about my screenings and being high risk with friends and others who are curious,” says Jeffs. “It’s freeing not to bottle it up.”
Advocating for Your Needs
Uncertainty over the procedures and what their rights are for getting them can leave many young women feeling shortchanged on their breast health. To break down barriers and gain access to good care, says Dr. Taylor, you’ll need to learn, like Jeffs, to be your own advocate for risk evaluation and screening.
Why it matters: Despite the challenges and stigma, getting regular breast cancer screenings if you’re high-risk can be a life-saving measure. These tips can help you advocate for your needs:
Know your risk. If you haven’t already, make sure you work with your health care provider to understand your unique risk factors for breast cancer. This should happen ideally before age 30, says Dr. Dean. “This is important so that we can identify high-risk women who may not otherwise have known they should have more vigilant surveillance,” she says. Jeffs also suggests documenting your family history—such as who was diagnosed with what, and when—somewhere handy like the notes app on your phone so you can easily access it when filling out forms at the doctor’s office.
Know your breasts. In addition to regular screenings as recommended by your doctor, a monthly self-breast exam is wise. “Having an awareness of what is normal for her breast tissue allows a woman to identify if something feels unusual,” says Dr. Dean. If you feel something concerning or abnormal, “push for the appropriate evaluation to exclude the rare possibility that it’s cancer.”
Be prepared for age-related comments. “I’ve been babied by health-care professionals who aren’t used to screening younger patients, including being told I look young enough to be in high school, and sometimes I’m spoken to like a toddler being eased through a booster shot,” Jeffs shares. “I understand it comes from a well-meaning place, but it can feel demeaning.” Don’t be afraid to speak up for yourself. While you should never have to justify why you’re seeking care at a younger age, sometimes simply stating your high-risk status can help quiet unnecessary comments.
Work with an experienced provider. “If possible, seeing a provider who specializes in or frequently sees high-risk breast cancer patients will make this easier and help ensure the best screening and prevention options are available,” says Dr. Taylor.
Take it one screening at a time. “Thinking about getting screened for breast cancer for most of my life—with the possibility of diagnosis and possible procedures I’ll need—can be overwhelming,” says Jeffs. “But catastrophizing does nothing but add more stress. It helps to take a step back, breathe, and remember that knowing your risk early is a good thing that could potentially save your life.”
- Mammogram Tips: American Cancer Society. (2019.) “Tips for Getting a Mammogram.” cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/mammograms/mammograms-what-to-know-before-you-go.html
- Breast Cancer Under 40: Oncology. (2009.) “Breast Cancer in Women Under 40.” cancernetwork.com/view/breast-cancer-women-under-40
- Breast Cancer Screening Recommendations: American Cancer Society. (2020.) “American Cancer Society Recommendations for the Early Detection of Breast Cancer.” cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/american-cancer-society-recommendations-for-the-early-detection-of-breast-cancer.html