Breast Cancer Risk Assessment: What Is It—And Are Mammograms Not Enough?
Women enjoy having their breasts squished between metal plates and X-rayed about as much as they like a Pap smear or having a cavity filled. That is to say, not at all. And yet the annual mammogram is a necessary ritual we all partake in once we reach a certain age, if not earlier.
There was a time—one not that long ago—when the breast cancer screening method was not routine. In the mid-1980s, right before the promotion of mammography screening became widespread, the death rate from breast cancer in the US remained unchanged for more than 40 years, according to The Journal of the American College of Radiology. Since 1990 it has declined by at least 38%. That’s attributed in large part to early detection with mammograms.
In the decades since, guidelines have changed and misinformation has swirled, but mammograms remain the gold standard for breast cancer screening. “Mammograms are the best tests we have for screening the general population,” says Elisa R. Port, MD, FACS, chief of breast surgery for the Mount Sinai Health System and director of the Dubin Breast Center. “They pick up about 85% to 90% of breast cancers, but they’re definitely not perfect.”
No, they are not. Olivia Munn, 43, highlighted this recently when she shared in an Instagram post that she was diagnosed with breast cancer just two months after a normal mammogram. “I wouldn’t have found my cancer for another year—at my next scheduled mammogram—except that my OBGYN, Dr. Thais Aliabadi, decided to calculate my Breast Cancer Risk Assessment Score,” she wrote in her post. “The fact that she did saved my life.”
Munn’s high score led to an MRI, followed by an ultrasound, and then a biopsy that revealed cancer. “Thirty days after that biopsy I had a double mastectomy.”
This whiplash is a common experience among breast cancer survivors. “In the past six weeks, I learned I am positive for a BRCA2 mutation, had stage 2 breast cancer, then had a double mastectomy,” wrote Today contributor Jill Martin in a personal essay last year. Like Munn, she had a normal mammogram just a few months prior that didn’t catch the cancer. It was an ultrasound and MRI, prompted by her genetic results, that led to her diagnosis and allowed the aggressive tumor to be removed by her surgeon, Dr. Port.
In her post Munn describes the surrealness of “feeling completely fine one day, to waking up in a hospital bed after a 10-hour surgery the next day.” “I hate how much I identify with that,” breast cancer survivor Katie Donbavand tells Glamour. “She’s right, it happens that quickly. Cancer is insidious. That’s what makes it so terrifying and terrible.”
Martin’s and Munn’s stories are a reminder that a “clean” mammogram isn’t always enough, leading some women to make anxious calls to their doctors’ offices to calculate their own risk or ask if they, too, need additional screening. So we asked experts to break down how breast cancer risk assessments work—and why mammograms can sometimes fall short in younger women.
Understanding your own breast cancer riskIn her post Munn encouraged women to ask their doctors to calculate their own breast cancer risk assessment score, as her ob-gyn did for her. But what is the score, and how does it work?
According to Ruth Oratz, MD, breast medical oncologist at NYU Langone Health’s Perlmutter Cancer Center and clinical professor of medicine at NYU Grossman School of Medicine, the Breast Cancer Risk Assessment Tool—also known as the Gail model—calculates the statistical probability of developing breast cancer within the next five years as well as lifetime risk up to age 90. The risk goes up as we age.
You can use the online calculator on the National Cancer Institute website on your own. (In fact, since Munn’s post, the tool has received a “dramatic increase in visits,” NPR reports.) It takes about five minutes to complete and asks questions about reproductive health (like how old you were when you got your first period), whether you’ve had a breast biopsy, and your family history of breast cancer. While you may know the answer to most questions, others can be trickier; that’s why Dr. Port says it’s better to do it in the context of a doctor’s visit under the guidance of someone who knows the benefits and limitations of the models.
“Different breast cancer risk assessment tools are available online, but they are not all the same,” says Thaïs Aliabadi, MD, Munn’s ob-gyn and the host of the new She MD podcast. “Some may underestimate the importance of family history of breast cancer, while others might underestimate the lifetime risk in specific populations, such as African-American women.” It’s the reason why she’s now developing her own breast cancer risk assessment tool to provide women with a more comprehensive and accurate calculation.
“One out of eight women will be diagnosed with breast cancer in their lifetime, and 75% of these women have no family history of breast cancer,” says Dr. Aliabadi. “Given these facts, it’s crucial for every woman to know her lifetime risk of breast cancer.”
Still, family history is weighted the heaviest when calculating this number—and is a key factor in determining when you should start mammograms or other screening measures, Dr. Port says. The US Preventive Services Task Force recommends women wait until 40 (lowered last year from 50) to begin mammogram screening—or 10 years younger than the youngest family member diagnosed with breast cancer. (So if your mother was diagnosed at 48, you should begin mammograms at 38.)
The American Cancer Society, however, recommends women begin screening with MRI and mammograms as young as 30 if they’re considered high risk for breast cancer. This includes those with a lifetime risk of 20% to 25% or greater from a risk assessment calculation and other factors like personal medical history, a known BRCA1 or BRCA2 gene mutation, or a first-degree relative with the gene mutation.
But like mammograms, the risk models aren’t perfect. Per the National Cancer Institute, “Some women who do not develop breast cancer have higher risk estimates than some women who do develop breast cancer.” They’re just one piece of the puzzle, Dr. Oratz says, but they can prompt women to start having open conversations with their doctors and come up with a plan tailored for them.
“Having information empowers patients,” she says. “It is very important for people to be aware of their health risks, their family history, and their own personal medical conditions. All of these things can affect the risk of developing cancer.”
Why mammograms aren’t always enough, especially for young womenA clean mammogram followed by a breast cancer diagnosis two months later sounds alarming—but Munn’s case isn’t all that rare, Dr. Alibadi says.
Remember: Mammograms pick up about 85% to 90% of breast cancers. “Mammograms may not pick up small tumors or subtle changes in younger women because breast tissue is denser in young women, hiding small abnormalities,” Dr. Oratz says.
That’s why women should talk to their doctor about the results of the mammogram and their individual risk factors to see if another screening method is needed. “Ask whether or not additional testing should be done—sometimes an ultrasound or sonogram is added to the mammogram,” Dr. Oratz says.
“Breast ultrasound is used as a supplemental screening tool, especially for women with dense breasts or those with specific concerns such as a palpable lump,” Dr. Alibadi says. “Breast MRI can detect small abnormalities that may be missed on mammograms or ultrasounds and is typically recommended for women at high risk of breast cancer, such as those with a strong family history or certain genetic mutations.”
The MRI is the screening tool that’s most valuable for younger high-risk women, says Dr. Port. Patients who are BRCA positive may even start MRIs in their 20s.
The important takeaway, at any age: Talk to your doctor about all three tests for breast cancer and when, based on your personal risk factors and health history, you should begin screening.
So what about breast exams?Not all screening methods are high-tech. In addition to recommending the annual mammogram, Dr. Oratz stresses the importance of clinical breast exams—where your primary care doctor, ob-gyn, or another experienced health care provider like a nurse practitioner, uses their hands to feel for lumps or other changes.
You can also take things into your own hands, literally. While most medical organizations don’t recommend breast self-exams as part of a routine breast cancer screening schedule, doctors like Dr. Oratz still suggest women perform a monthly check. This familiarity can help women spot changes in the look or feel of their breasts to bring to the attention of their doctor before their next scheduled visit.
In fact, according to an oft-cited survey from the National Health Interview Survey, most breast cancer survivors (57%) reported a detection method other than a mammogram. Many detected it themselves, either through self-examination (25%) or by accident (18%), for example, when applying deodorant or shaving their armpits.
This was the case for Rachel Weber, who was diagnosed with breast cancer at 35 after she found a lump while putting on her sports bra. “It felt like a little marble in my chest,” she says. “Funny enough, I’d had my annual visit to the ob-gyn a week beforehand. My doctor performed a breast exam then and didn’t feel anything out of the ordinary.”
Because her cancer was stage 2 (the size of the tumor), grade 3 (the rate of growth), it was a relatively small, fast-growing cancer. “The lump was likely much smaller at my ob-gyn appointment, which is why my doctor didn’t detect it during my breast exam,” she explains. The next morning her doctor referred her for a mammogram, then an ultrasound and a biopsy—which eventually lead to the devastating call confirming she had cancer. “Because I found my cancer when I did, my care team was able to act quickly. I had a complete response to chemo and continue celebrating my cancer-free status.”
It was during a breast exam at her annual checkup that Donbavand’s ob-gyn found a cyst and suggested she get her first mammogram at 38. It came back normal in March 2022 and Donbavand learned she was prone to benign cysts; her mind was at ease—until she discovered a lump herself about a year later. Another mammogram right before her 40th birthday in May 2023 came back abnormal, leading to a biopsy. It was cancer.
Both Donbavand and Weber describe feeling blindsided by the news, especially as healthy young women with no family history of breast cancer. “I wasn’t at risk of developing breast cancer,” Weber says. “I rarely drink. I was training for a half marathon. I was not supposed to get diagnosed with breast cancer.”
Says Donbavand, “I was surprised to learn then that only about 20% of breast cancers are genetic. American Cancer Society puts that number even lower at 5 to 10%. I really thought, Hey, I’m young. I’m going to my annual gyno. My mom never had breast cancer. I don’t smoke or drink. I’m okay. It’s something I don’t need to worry about, at least not yet.
“I caught my cancer so early,” she continues. “I know I’m very lucky, but it had already spread so much that I still suffered through three surgeries, eight rounds of chemo, and 25 sessions of radiation. The dark part of my thoughts wonder what would have happened if I didn’t find the tiny lump when I did. If I had waited a few more months or another year, what then?”
You are your best advocate.Approximately 7% of women with breast cancer are diagnosed before the age of 40—which is why Adriana Gini first dismissed the lump she felt on each breast at 33.
Eventually she saw her midwife for a breast exam. She learned she had dense breasts—a risk factor for breast cancer—but was told to “wait and see.” After pushing for a mammogram, and then an ultrasound, both of which came back inconclusive, she eventually had a lumpectomy to rule out cancer. Thankfully, she was cancer-free, but she learned she had atypical ductal hyperplasia, a precancerous condition that affects cells in the milk ducts and is associated with a higher lifetime risk of developing breast cancer.
“My [surgical oncologist] explained I have a 1% to 2% risk higher than everybody else every year of developing breast cancer,” she says. “So if 10 years go by, I have a 10% to 20% higher risk of developing breast cancer than people who don’t have this.”
It took trusting that something wasn’t right—and continuing to advocate for herself for more testing—but she’s now in a high-risk screening program alternating between mammograms, ultrasounds, and MRIs every six months for the rest of her life.
Donbavand’s advice: “You know your body better than anyone else.” She says, “If something feels off, if you find even the smallest something strange, don’t wait to get it tested. I’m alive today because I found that minuscule lump and had it checked out.”
Bottom line, says Dr. Oratz, “Power is knowledge. Be open and have a full discussion with your doctor about your breast cancer risk and your concerns.”
Kylie Gilbert is a writer and editor based in New York City. She is the former associate editorial director at InStyle. Her writing has also appeared online in New York Magazine’s The Cut, Furthermore for Equinox, Health magazine, and Healthline.