ILC cells with typical diffuse growth pattern

Imaging Challenges:

• On mammograms, ILC is often missed because it doesn’t form a mass and microcalcifications (a typical warning sign in other breast cancers) are rarely present. Estimates suggest they show up in only 1–25% of ILC cases.
• Up to 30% of invasive lobular carcinomas are not identified on mammograms.
• Ultrasound often fails to detect ILC, and diagnosis is often delayed.
• Dense breast tissue (means there’s more glandular and fibrous tissue than fat) makes ILC even more difficult to spot.
• Because of these factors, lobular tumours are sometimes only diagnosed once they are already large or have spread.

Better detection methods:
Magnetic Resonance Imaging (MRI) scans and Contrast enhanced mammograms (CEM) are often more effective at finding ILC.

Metastases:
When lobular breast cancer spreads to other parts of the body, it can be more difficult to detect. ILC metastases are often less visible on standard scans.

Important note!
 
Even though lobular breast cancer is harder to detect, regular participation in breast screening programs remains crucial, since many tumours and microcalcifications (which can be malignant) can still be identified this way.

1. Imaging and Surgical Planning Difficulties

The diffuse growth pattern of lobular breast cancer makes it hard to define tumour margins.
This can complicate surgery, sometimes resulting in the need for additional procedures, which may delay further treatment.

2. Hormone Therapy Resistance

Most lobular breast cancers are hormone receptor-positive and respond well to hormone therapy at first. Over time, though, some can develop resistance. The unique biology of lobular breast cancer may influence how effective endocrine therapies are in the long term.

3. Limited Chemotherapy Benefit

Chemotherapy uses drugs to kill cancer cells throughout the body. However, lobular breast cancer tends to be less sensitive to chemotherapy compared to other breast cancer types. In some cases, hormone-based treatments may offer better results.
More studies are needed to identify which subgroups of patients with lobular breast cancer could benefit most of chemotherapy.

4. Radiation Therapy Complexity

Radiation therapy uses high-energy rays to target and destroy cancer cells. It’s an effective treatment, but because lobular breast cancer can affect multiple areas of the breast (multifocality), achieving precise targeting can be more challenging.

5. Lack of Targeted Therapies

Lobular breast cancer tends to have unique genetic changes, such as CDH1 loss, but there are currently no proven effective treatments that target these changes directly.

6. Exclusion from Clinical Trials

Many clinical trials don’t specifically include or track patients with lobular breast cancer, limiting their access to new treatments.
This creates a cycle where lobular disease remains under-represented and under-research.

created with Biorender.com

What Patients Should Know

If you have lobular breast cancer and notice ongoing unusual symptoms – digestive issues, bloating, pelvic pain, neurological changes – don’t dismiss them. They may signal metastasis in areas not typically associated with breast cancer.

Advocating for lobular-aware imaging and follow-up is essential.
Lobular breast cancer is different to other breast cancers – and our care shouldn’t be the same either.

Understanding its characteristics is crucial for symptom detection, effective treatment and management.

• ELBCC.org: ILC Info
• ClinicalTrials.gov: Lobular Breast Cancer Trials
• Mayo Clinic: Lobular Cancer Therapies
• Memorial Sloan Kettering: Research Initiatives
• Johns Hopkins Medicine: Clinical Research
• European Society for Medical Oncology: Treatment Guidelines

• Evidence based breast cancer guidelines England
• Evidence based breast cancer guidelines Germany
• Evidence based breast cancer guidelines The Netherland
• Evidence based breast cancer guidelines Norway