Lobular Breast Cancer: Why MRI and Education Are Critical

Invasive lobular carcinoma (ILC) represents a unique challenge in oncology, behaving differently from the more common ductal disease at almost every stage of care.

During a recent multidisciplinary panel discussion hosted by Oncology Nursing News and CancerNetwork, Patricia Jakel, MN, RN, AOCN, shared her personal and professional perspective on why ILC demands a specialized approach.

As an advanced practice oncology nurse and co-editor in chief of Oncology Nursing News, Jakel’s story highlights a critical gap in how this disease is diagnosed and understood.

The Failure of Standard Imaging

Jakel’s experience with ILC began with self-diagnosis. Despite being an oncology nurse, she found herself navigating a system where standard imaging failed her twice. Her initial cancer was detected just five months after a negative mammogram and ultrasound. Remarkably, the same pattern repeated 10 years later during a recurrence.

In both instances, Jakel had recently undergone mammography and ultrasound with "negative" results. During her recurrence, she even had a lengthy conversation with a radiologist who insisted that a mammogram was the correct path and discouraged the use of an MRI. Trusting her instincts, Jakel sought a second opinion and requested an MRI, which immediately revealed the tumor.

This personal history underscores a major theme of the webinar: why ILC is frequently missed on standard mammograms and the ongoing debate regarding the necessity of MRI in ILC workup.

Viewing ILC Through a Different Lens

A core issue Jakel identified is that ILC is often treated using protocols designed for ductal disease, despite its distinct biological behavior. Jakel admitted that earlier in her career, she primarily focused on standard markers like ER/PR and HER2 status without fully appreciating that lobular cancer requires a different lens.

"I was not told lobular is different," she noted, reflecting on her treatment at a large academic center.

The underlying biology of ILC challenges many assumptions regarding how breast cancer spreads, recurs, and responds to therapy. The webinar experts emphasized that clinical practice must catch up to this biology, particularly regarding surgical margins and genomic assay accuracy.

Bridging the Education Gap

While Jakel acknowledges that the medical community has progressed over the last decade, she insists that a significant gap in patient education remains. Oncology nurses play a pivotal role in filling this void, helping patients understand why their diagnosis might not follow the "standard" breast cancer narrative.

Jakel’s story is a call to action for both providers and patients to advocate for precision oncology. Because ILC is often underrepresented in clinical trials and can be "masked" on traditional imaging, awareness is the first step toward better outcomes. As Jakel’s journey proves, a second opinion and the right imaging tools can make the difference between a missed diagnosis and a life-saving discovery.