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“I’m so lucky.” I say this often, despite being diagnosed with breast cancer at the age of 38. I’m lucky because both my primary care physician and gynecologist recommended I get a mammogram in my midthirties since my paternal grandmother died from the disease. I put off following their orders for over a year, convinced I was too young (and busy) to worry about breast cancer. I was annoyed that I had something else on my to-do list. The fact that my doctors pushed me to get an early mammogram saved my life.
When the mammogram led to an ultrasound, which led to a biopsy, which led to the words “invasive lobular carcinoma,” I was shocked, but—believe it or not—I still felt lucky, because even with the delay, the malignant tumor had only progressed to stage 2. I don’t like to think about what would have happened if I’d waited a decade to get screened.
Soon it will become standard for women to get mammograms earlier. This May, the U.S. Preventive Services Task Force, an independent health panel that makes evidence-based health recommendations, issued a draft of new guidelines for breast cancer screening. The group now recommends that women at average risk (those with no major risk factors, like certain genetic markers) start getting regular mammograms at age 40, instead of potentially waiting until 50.
The new advice comes after a bit of back-and-forth. In 2009, the task force recommended against routine mammography screening for women ages 40 to 49, citing concerns that earlier screening was leading to unnecessary biopsies and treatment in younger women, among other issues. But since then, the country has seen both an increase in breast cancer diagnoses among younger women and continued alarming death rates among Black women—two major factors prompting the panel to revise its view, says its vice chair, Wanda Nicholson, MD. More than 40,000 Americans are expected to die from breast cancer in 2023, but the task force estimates its recommendations could reduce this number by 19 percent. When breast cancer is caught early, the five-year survival rate is nearly 100 percent, according to the Breast Cancer Research Foundation (BCRF). As I type this, I am cancer-free, and the prognosis that I’ll stay that way is good.
I’m not some strange outlier: According to the CDC, nearly one in 11 women who are diagnosed with new breast cancer cases are under 45. Since 2016, Nicholson says, the percentage of women in their forties being diagnosed with breast cancer has been increasing about 2 percent every year. Data also show more women below age 40 getting breast cancer, “and we don’t know exactly why that is happening,” says Lauren Elreda, MD, director of breast medical oncology at New York-Presbyterian Queens. “In 90 percent of cases, it’s sporadic”—meaning a form of cancer that is not related to genetics. “Those [younger] patients tend to be presenting with more aggressive and advanced disease.” As younger women are not the majority of those diagnosed with breast cancer, most clinical trials and research don’t include them, which makes the reasons for the trend difficult to determine. But initial risk factors for sporadic breast cancer can include early onset of menstruation, previous exposure to high-dose radiation, obesity, having dense breasts, high alcohol consumption, sedentary lifestyle, and hormonal and environmental changes.
In an odd twist, both never being pregnant and being pregnant can also be risk factors. Studies show that the high level of hormones, such as progesterone and estradiol, that occur during pregnancy can likely induce some level of protection against breast cancer. At the same time, there is “a subset of young breast cancer that is related to pregnancy. It affects one in 3,000 pregnant women, most of whom are under 40,” Elreda says. “Higher levels of estrogen and prolactin can trigger cancer growth, and the risk can carry into the postpartum period for up to a year and during lactation. These hormonal changes can increase breast density, which makes it more difficult to detect cancer on a mammogram.”
Even though women’s risk rises as they age, in Elreda’s opinion, awareness of the new recommendation should empower women under 40 to ask their doctors about whether earlier mammograms might be right for them. Organizations like BCRF are also funding projects in hopes of developing a screening protocol based on more than age. “The future of screening and prevention research is really individualized risk assessment,” says Dorraya El-Ashry, PhD, chief scientific officer of BCRF. The group’s Precision Prevention Initiative used AI to enhance mammogram reading, and found that “it can see things that the eye alone can’t see. Studies expanding it to other parts of the world, as well as in different populations of breast cancer patients, have demonstrated that it is a much more accurate detection of risk for breast cancer than [some] currently used models.” She envisions screening that could tell you in real time if your prevention methodology—whether it be exercising, a specific diet, or preventive medicine—is actually reducing your risk.
My oncologist told me she wanted to throw everything she could at the disease because she knew that because I’m a Black woman, the odds were not in my favor—no matter how lucky I felt. “We know that Black women are 40 percent more likely to die from breast cancer compared to white women,” Nicholson says. “We also know—for reasons we don’t yet understand—that Black women are more likely to be diagnosed early in these younger years with more aggressive cancers and at more advanced stages.”
Last October, the Estée Lauder Companies Charitable Foundation announced a donation of $15 million to BCRF to fund the study of the biological and social factors that influence breast cancer risk and outcomes for Black women. “There has been tremendous progress made in the last 10 to 20 years that has all improved outcomes for women with breast cancer and has resulted in a 43 percent decline in breast cancer mortality over the last 30 years,” El-Ashry says. “However, not all women have benefited from that. And so it is important that we take all of those findings, the data, and the knowledge that we have about breast cancer and ensure it works for and benefits all.”
With women getting breast cancer at a younger age, finding community and resources for emotional support is necessary. Organizations like Tigerlily Foundation, a national women’s health and oncology organization that provides breast-health related education, advocacy and hands-on support, are striving to give young women the help they need. Once I finished active treatment, my belly was no longer constantly queasy from the chemotherapy drugs. My hair began to grow back and my radiation burns began to heal, and I could shift my focus beyond myself. I wanted to do something to help Black women who weren’t so lucky, and started volunteering with Tigerlily.
Maimah Karmo founded Tigerlily after she was diagnosed with breast cancer at age 32. She found a lump and her insurance company initially didn’t clear it for a screening. Then once she was finally able to get the screening she wanted, the scans were clear. But still, she knew something was wrong. The lump was getting bigger and she was having night sweats. “The technology can’t see what I can feel,” Karmo recalls telling her doctors. She requested a biopsy. It would take her six months to convince her doctors to perform one.
“They called me on February 28 at 4:44 PM to tell me I had triple negative breast cancer,” Karmo says. “It was aggressive and the tumor had more than doubled in size since the mammogram.”
“My goal has been to build an army of angels,” Karmo says. “We have a program called an ANGEL Advocacy Program, where we train Black women to become their best advocates.” Tigerlily also strives to increase participation in clinical trials for women of color. Karmo feels it is her duty to do the work that she does because she once saw so few young women of color in breast cancer awareness campaigns or on Capitol Hill advocating for change in this arena. “I am responsible for you as my sister and pulling you out of the fire before you get burned,” she says.
Along with more awareness and education, Karmo also wants to see screenings be more affordable and accessible. Why not have screenings available at grocery stores and pharmacies? “I want to see a pop-up shop, like a Sephora,” she says.
Maybe one day I won’t feel lucky for having proactive doctors.
Maybe one day I won’t feel lucky for having access to lifesaving tests and treatments.
Maybe one day this will all be normal for women who look like me.
A version of this story appears in the October 2023 issue of ELLE.
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Javacia Harris Bowser is a freelance journalist, blogger, and entrepreneur based in Birmingham, Ala., and the founder of See Jane Write, an award-winning membership organization and website for women who write and blog. A proud graduate of the journalism programs at the University of Alabama and the University of California at Berkeley, Bowser has written for a number of outlets including USA Today, Good Grit magazine, Birmingham magazine, The Birmingham Times, B-Metro magazine, and Birmingham’s NPR affiliate WBHM 90.3 FM.