Boston, MA, US, November 3rd, 2026, NewsDirect
Despite nearly 50,000 new U.S. diagnoses each year and incidence increasing faster than other breast cancer types, invasive lobular carcinoma (ILC) remains significantly understudied, lacks dedicated treatments, and is still unfamiliar to many healthcare providers.
A new national coalition of clinicians personally affected by invasive lobular carcinoma (ILC) has formed to educate healthcare providers, raise awareness and advocate for urgently needed research.
Known as Clinicians with Lobular Breast Cancer Speaking Out for Change (Clinicians with Lobular-SOC), the group was established in partnership with the Lobular Breast Cancer Alliance (LBCA), the nation's only organization dedicated exclusively to invasive lobular carcinoma. Together, they will develop educational resources for healthcare professionals, present at medical conferences and training programs, and advocate for increased investment in lobular-specific research and treatments.
“I am a breast oncologist and even I did not realize that when my mammogram was clear the symptoms I was feeling, which I should have known better not to ignore, were telling a different story,” said breast oncologist Dr. Sasha Stanton, a founding member of Clinicians with Lobular-SOC. "When I underwent a diagnostic mammogram and MRI just six months later, I learned I had Stage III invasive lobular carcinoma. My tumor measured more than six centimeters, and the cancer had already spread to four lymph nodes."
Like many ILC tumors, Dr. Stanton's cancer went undetected on routine imaging until it had grown significantly, and she was feeling symptoms. One year after completing treatment, she joined ten other clinicians—either diagnosed with ILC themselves or whose spouses have faced the disease—to help improve awareness and education.
ILC is the second most common form of breast cancer, but it remains one of the least understood. Rather than forming a distinct lump, it typically grows in thin, single-file strands of cells that are difficult to detect through mammography, ultrasound, and physical examination. It can also spread to uncommon sites—including the ovaries, gastrointestinal tract, peritoneum, and eye socket—and is more likely to recur many years after diagnosis. Because it is hard to image, detecting a recurrence and monitoring a metastatic progression is nearly impossible. So far, there has been little study of ILC despite these troubling characteristics, and there are not yet any lobular-specific clinical treatment protocols.
Despite accounting for nearly 15% of all breast cancer diagnoses—approaching 50,000 new U.S. cases each year and affecting more women annually than ovarian cancer—ILC remains dramatically understudied and relatively unknown. Most Americans have not heard of it and most primary care doctors and OB/Gyns know next to nothing about it.
The slow pace of ILC research, lack of lobular-specific treatment and perception of a general lack of awareness of lobular breast cancer and its troubling characteristics was what inspired patients to form LBCA and change this. The clinicians who, with the support of LBCA have formed Clinicians with Lobular-SOC, believe they can augment LBCA’s awareness-raising efforts. They believe that as clinicians with firsthand experience of this breast disease, they are uniquely able to accelerate education about ILC within the medical community and strengthen the call for greater investment in ILC research.
The founding members represent a range of medical specialties and personal experiences with ILC, including:
- Dr. Tracy Cushing, an emergency medicine physician, is advocating for more ILC research and is struck how little progress in ILC understanding has been made in the two decades since she was a medical student.
- Dr. Maryanne Bombaugh, a U.S. military veteran and OB/GYN, is working to improve clinician education and earlier diagnosis of ILC following her own experience of a delayed diagnosis after clear mammograms.
- Dr. Kimberly Oney, a breast psychologist, who was diagnosed with de novo metastatic ILC after a misdiagnosis of stomach cancer is energized by the opportunity to teach others about this breast cancer type and press for better methods of diagnosis and specific treatments.
- Tamra McDevitt, RN, a neurology care coordinator, struggled to find information about ILC following her diagnosis and was shocked to learn it has no specific treatment feels compelled to help push for more research.
- Dr. John Doski, a pediatric surgeon, joined the group after his wife, Dr. Deborah Mueller died precipitously from metastatic ILC just a year after what may have been a misdiagnosis of early-stage ILC. He is committed to working hard in her memory to help find answers for how ILC behaves and promoting research to find treatments to stop it.
The group's priorities are to:
- Raise awareness of invasive lobular carcinoma within the medical community.
- Expand clinician education on ILC diagnosis, treatment, and emerging research.
- Advocate for increased investment in lobular-specific research to find better methods of diagnosis and treatment monitoring and ILC targeted therapies.
To find out more about Clinicians with Lobular SOC or invite them to speak contact: Laurie Hutcheson
To learn more about their sponsoring organization, the Lobular Breast Cancer Alliance and lobular breast cancer patient education resources, visit lobularbreastcancer.org.
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.
About ILC Research
Lobular breast cancer is difficult to study in the lab because there are few cell lines and mouse models available for research and in clinical settings because the tumors are slow growing and so difficult to image. Lobular breast cancer patients are often excluded from clinical trials because they do not have “measurable disease.”
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