Boston, MA, USA, June 11, 2026 (GLOBE NEWSWIRE) — Despite nearly 50,000 new diagnoses each year and cases increasing faster than other breast cancer types, 4 in 5 Americans have never heard of lobular breast cancer.
Lobular breast cancer is the second most common type of breast cancer in the United States, yet it remains one of the most invisible. New national survey research released today by the Lobular Breast Cancer Alliance (LBCA) reveals a striking awareness gap: the vast majority of Americans have never heard of lobular breast cancer, most patients diagnosed with it say they were not given comprehensive information about the disease, and even hospitals are largely silent on the subject.
Unlike many breast cancers that form distinct lumps, lobular breast cancer often grows in thin, sinewy lines that can be difficult to detect through imaging, physical exams, and treatment monitoring. This unique growth pattern makes the disease more challenging to detect and track clinically. Though fairly common, not enough is known about it for there to be any specific treatments, which may help explain why it remains largely overlooked in public awareness and patient education.
The findings paint a clear picture of a cancer hiding in plain sight—one that is increasingly common, yet still overlooked in public awareness, patient education, and healthcare conversations. Together, the results underscore a growing public health blind spot that demands greater attention from clinicians, hospitals, advocacy groups, and the media.
A Cancer Blind Spot: 4 in 5 Americans Have Never Heard of It
Invasive lobular carcinoma (ILC), or lobular breast cancer, accounts for 15% of all breast cancer cases, with up to 48,000 new diagnoses each year in the U.S. — more than the annual incidence of brain, liver or ovarian cancer. Yet public recognition is alarmingly low:
- Only 19% of U.S. adults have ever heard of lobular breast cancer — meaning 4 in 5 adults have no name recognition of the disease at all.
- Even among people personally diagnosed with breast cancer, nearly half (47%) say they have never heard of lobular breast cancer.
- Among those who say they have not heard of it, only about half correctly identify “lobular” as a type of breast cancer — others guess it is a stage, a genetic condition, or even a benign disease.
- Awareness also varies by geography and household income, with some locations showing nearly 3x higher recognition, revealing a national education gap around one of the most common forms of breast cancer.
At Diagnosis, the System Goes Silent
Even patients who are diagnosed with lobular breast cancer rarely receive the education they need to understand it. According to the LBCA’s international patient survey, the disconnect between what patients need at diagnosis and what they receive is striking:
- More than 8 in 10 ILC patients say no one on their care team gave them comprehensive information specifically about lobular breast cancer at diagnosis (83% in the U.S. and 88% internationally).
- Hospital websites are not filling the gap: 85% of U.S. and 95% of international ILC patients say their hospitals have no lobular breast cancer information on their websites.
The result is a patient experience that is inconsistent and incomplete — leaving thousands of newly diagnosed women to piece together their own understanding of the disease.
A Call to Action: Lobular Breast Cancer Deserves Its Own Voice
“These findings should be a wake-up call,” said Laurie Hutcheson, LBCA Executor Director and 7-year ILC survivor. “Lobular breast cancer is not rare — it is the second most common type of breast cancer and incidence is rising. But it has been hidden by a system that lumps all breast cancers together, a public conversation that rarely names it, and a care experience that too often sends newly diagnosed patients home without the words, the resources, or the community they need to understand their diagnosis and have all the information about the best course of action.”
LBCA is calling on healthcare providers, hospital systems, breast cancer organizations, media, and the public to take three immediate actions:
- Name it. Hospitals and care teams should ensure every patient diagnosed with lobular breast cancer receives clear, comprehensive, subtype-specific information — and a direct referral to dedicated resources like LBCA — at the point of diagnosis.
- Publish it. Hospital systems and breast cancer organizations should commit to dedicated lobular breast cancer content on their websites and in their patient education materials.
- Talk about it. Media, advocates, and the public should help bring lobular breast cancer into the same mainstream conversation as other forms of the disease — because what people cannot name, they cannot detect, demand answers about, or fund research for.
To learn more about lobular breast cancer or access patient education resources, visit lobularbreastcancer.org.
About the Surveys
Findings are drawn from two surveys conducted by the Lobular Breast Cancer Alliance: a public awareness survey of 1,000 U.S. adults (fielded February 17–18, 2026; weighted to U.S. Census benchmarks for age and gender; ±3.1 percentage point margin of error at the 95% confidence level), and a separate international patient survey of individuals diagnosed with invasive lobular carcinoma in the U.S. and abroad.
About the Lobular Breast Cancer Alliance (LBCA)
Founded in 2017 by individuals with invasive lobular carcinoma (ILC), LBCA is a 501(c)(3) nonprofit organization dedicated to raising awareness of ILC and the need for more ILC research. As the only organization in the US dedicated to lobular breast disease, LBCA is committed to making all who are touched by ILC aware of its unique characteristics and the critical need for more ILC research. LBCA is the go-to source for information on lobular breast cancer including current studies, lobular-specific clinical trials, and educational content and resources patients can use in conversations with their care teams available in over fifteen languages. LBCA is committed to promoting and funding vital ILC research. The organization is guided by an international scientific advisory board of researchers and clinicians, and a patient advocate advisory board and partners with patients, scientists, clinicians, and breast cancer organizations worldwide to increase dialogue and collaboration about ILC research. Visit the LBCA website at lobularbreastcancer.org.
