The scary but lifesaving truth about Latinas and breast cancer

Last year, at 39 years old, I learned I had dense breasts. It was information told to me almost in passing as I received my first mammogram and ultrasound. What it meant and how it could affect me was not communicated to me; I learned about it the hard way, nine months later, when I was diagnosed with breast cancer.

In February, I was diagnosed with Stage 3A, Grade 3 invasive ductal carcinoma in my right breast, which had spread into some lymph nodes in my right armpit. After further testing, my team of doctors at City of Hope said I have inflammatory breast cancer, a rare and aggressive form of cancer. My cancer moved fast and mean, like a New York City street rat that just spotted some pizza crust on the ground. I started chemo one week after my diagnosis and will have a double mastectomy and radiation in the coming months.

Thankfully, it was caught before it spread even further — despite the fact that the first hospital I went to had neglected to give me a necessary six-month follow-up mammogram and ultrasound. Instead, I was examined nine months later, because that was the earliest appointment they had. Those three months would have made a huge difference in my diagnoses and subsequent treatment.

Dense breasts are not some rare medical mystery you only hear about on an old episode of “Grey’s Anatomy.” Although it’s more common in younger women, about half of the breast-having population in their 40s have them. The harsh, scary reality is that having dense breasts not only gives a person a higher chance of developing cancer — for reasons unknown by science as of yet — but also increases the chances of cancer going undetected on a mammogram until a more advanced stage.

Breast cancer is the leading cause of cancer death among Latinas — and we are not being screened early enough because of cultural, systemic and environmental factors, which puts us at greater risk to die a totally preventable death.

“[For] Latinas as a group, the No. 1 cause of cancer incidence and cancer death is breast cancer,” explained Ysabel Duron, a breast cancer survivor and the founder and executive director of the Latino Cancer Institute (TLCI), a national research network and community working to address cancer within the Latino population. “It’s increasing in younger women, and the reason for these discoveries is because they are expanding research and understanding that [women are] not all alike.”

So, what are dense breasts? Breasts are primarily made up of three types of tissue: glandular, fibrous and fatty. (There are also muscle, nerves, veins and arteries.) If someone’s breasts have more glandular and fibrous tissue than fatty tissue, their breasts are considered dense. But there are levels of breast density that are important to know.

Dense breasts can have “scattered fibroglandular densities,” or be “heterogeneously dense” or “extremely dense.” On a mammogram, dense breast tissue appears white, but so does cancerous tissue — which means dense breast tissue can hide any cancer that may be present and can result lead to cancers being missed in mammograms.

“Women with the most mammographic density are at a four- to six-fold increased risk of developing breast cancer compared with women with the least dense tissue,” explained Duron. If a patient has dense breasts, they need different testing via an ultrasound and/or MRI to catch any cancer that may be obscured by the density.

Breast cancer risk increases if, for example, there’s a family history of breast or other cancers, inherited genetic mutations like BRCA1 and BRCA2, or several other factors. But this lifesaving information is often unknown to many Latinas.

“Hispanics and Latin Americans are less likely to receive screening for BRCA mutations, so while it’s not clear that they have any actual increased risk of having mutations, they’re less likely to be screened for those mutations, and so then to know about them,” explained Dr. Dorraya El-Ashry, chief scientific officer at the Breast Cancer Research Foundation (BCRF), a nonprofit organization that provides critical funding for cancer research worldwide.

JoAnn Pushkin had her breast cancer go undetected on mammograms for years. After feeling a lump, she went for a mammogram, but the radiologic technician who performed the exam told her they found nothing.

“I said, ‘Oh, no, I’m the lady with the lump so big I can feel it.’ And she says, ‘You have dense breasts. That’s going to be a very hard find for us,’” Pushkin recalled. “They do the ultrasound, and there it is, clear as a bell. Within 10 minutes, I found that I had cancer, I found out I had dense breasts, and I found that it had been missed many years in a row and was no longer [in an] early stage because I had dense breasts.”

The experience led Pushkin to co-found Dense Breast-Info.org (DBI), which provides resources in both English and Spanish to help patients and healthcare providers better understand dense breasts and why additional ultrasound and MRI screenings matter. Many organizations, including DBI, have advocated for legislation that would require providers to notify patients if they have dense breast tissue and are fighting for insurance laws to cover these additional tests at the state and federal level. These laws would require physicians and clinics to tell a patient, in their preferred language, their level of breast density, the risks and what type of imaging is best for them.

Breast density notification laws already exist in the District of Columbia and 39 states, including California, Texas, Arizona and Florida. However, as these individual state laws are being passed, their language and requirements differ. Some states, for example, don’t require that a patient be provided information about their specific breast density, which would be helpful in improving early detection.

“Women across the United States were getting very inconsistent information about breast density depending on where they live, and so I knew we needed a national standard,” Pushkin said.

In 2023, the Food and Drug Administration announced updates to the mammography regulations. Per the release, the updates “require mammography facilities to notify patients about the density of their breasts, strengthen the FDA’s oversight and enforcement of facilities and help interpreting physicians better categorize and assess mammograms.”

Even so, one study found many primary care doctors had no knowledge of this legislation, with some reporting feeling uncomfortable answering patient questions on breast density. California’s breast density law went into effect in 2013 and was extended to Jan. 1, 2025. Yet where it stands now, and for the foreseeable future, is uncertain.

When I called the FDA to get insight into a further extension and how Spanish-speaking communities are being informed about risks related to dense breasts, I was told the entire press team was laid off as a result of President Trump’s massive cuts to the federal budget. And as rollbacks to DEI initiatives continue by the White House, which has removed Spanish-language versions of informational messaging and instituted policy that vilifies other languages, Latinos will suffer as a consequence.

Even before this horrifying new reality, people struggled to receive or understand the information, requiring more work from doctors and within our communities to ensure awareness.

Darcie Green, executive director of Latinas Contra Cancer, points out that if cancer research is gutted by Trump’s cuts, it’ll have a far-reaching impact across the country.

“And the people who will be most impacted are going to be people who already experience health disparities, like low-income folks, immigrant communities and Black and brown people,” she added. “And frankly, that might be the point of it all. Who cuts cancer research? This is just beyond cruel, and probably intentionally so.”

At Latinas Contra Cancer, they launched Defensoras, a cohort dedicated to health advocacy and organizing that empowers Latina patients to change the system by working within their communities to address the issues causing these disparities.

I spent my whole life not knowing about my breast tissue. All I’ve known since puberty is that they make my back hurt, plus they make buttoned shirts a nightmare to wear. It wasn’t until after my first mammogram and ultrasound last year, when I read Dyan Neary’s illuminating piece on dense breasts in the Cut, that I understood more fully what dangers reside under my crop top. This is despite the fact that I live in California, where there is already a law stating I should be fully informed on my breast density.

However, getting that information also presents a problem — because Latinas receive mammographic screenings at lower rates than other ethnic groups. And, as Green pointed out, Latinas often miss or don’t make follow-up appointments for a host of reasons.

“We’re missing the opportunity to find that cancer at the earliest stage possible, when it’s more treatable and survivable,” said Pushkin.

The reasons for this low screening rate are varied, and most are sadly unsurprising. There’s the high cost of, and low access to, healthcare; language barriers; lack of transportation; being undocumented; being so busy with work and family that seeing a doctor is not a priority; institutional bias or bad experiences in healthcare; lack of knowledge of affordable public treatment programs; programs that fall short on the quality care one would get at a larger cancer center; and a general hesitation to advocate for ourselves, especially against doctors and medical systems that ostensibly should be taking care of us.

Another major issue is cultural — we simply don’t talk to each other enough about our health.

“One of my mantras is talking about cancer won’t kill us. The silence will,” said Duron of the Latino Cancer Institute. “Too many Latino families, in fact, have not passed on the history of cancer in their families … There’s a great deal of education that needs to come before we even get to the screening in order to address these very issues.”

“The more we get ourselves out of the stigmas of our reproductive organs, our breasts, the more likely we are to notice when something has changed and ask each other questions,” said Green. “We need to normalize being open about our bodies, in whatever way makes sense for us. There’s just so little education being done around dense breast tissue to begin with.”

As organizations face Trump-enacted cuts to vital cancer research, fighting to protect ourselves and seeking lifesaving knowledge is now more imperative than ever. As Dr. El-Ashry, of the Breast Cancer Research Foundation, notes, research is “on a continuum.”

“When you interrupt research along that pathway, it’s not just reducing the level of water coming out of the spigot, it’s literally turning it off. And to restart research that has been stopped is very hard to do. We lose the progress that we would have made.”

It’s hard not to think about all those in my community who’ve faced a multitude of obstacles, some of which cost them their lives; how pervasive fear and silence remain; and the mountain of bureaucratic and educational barriers that ultimately harm us as Latinas. But we can start fighting back by sharing our stories, informing each other and looking out for each other.