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Metastasis and Carcinoma Case Studies / Cancer Diagnosis and Treatment / Breast Lesions and Carcinomas · Journal article
npj Breast Cancer · August 12, 2026
Early or partial results. Treat as a signal, not a conclusion.
This cross-sectional survey reports patient-perceived prevalence of misdiagnosis (26.2%) and delayed diagnosis (44.5% waited ≥1 year) in 321 patients with metastatic invasive lobular cancer, with bone-related conditions and benign breast disease as the most common initial misdiagnoses. The study is descriptive and hypothesis-generating; it does not compare outcomes between misdiagnosed and correctly diagnosed groups, nor does it validate reports against medical records.
Cross-sectional patient survey with descriptive statistics. Patients with metastatic invasive lobular cancer (ILC); setting and specific eligibility criteria not detailed in source. Intervention: Survey administration; no intervention applied. n = 321.
26.2% (n=84) of 321 patients with mILC reported misdiagnosis; 31% (n=26) of misdiagnosed cases had ≥2 misdiagnoses 44.5% of patients waited ≥1 year for accurate diagnosis Top 5 misdiagnoses were bone-related condition (24.7%), benign breast condition (23.4%), another type of BC (7.8%), diagnostic delay (7.8%), and menopause-related (5.2%)
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Clinicians should be aware that nearly one-quarter of patients with mILC report misdiagnosis, often as bone disease or benign breast conditions, and that diagnostic delay of ≥1 year occurs in nearly half of cases. The poor performance of mammography (20–25% detection) in this setting warrants heightened vigilance and consideration of alternative imaging modalities when mILC is suspected.
A patient-reported survey study using descriptive statistics without a control group or comparator; establishes prevalence of reported misdiagnosis in metastatic invasive lobular cancer but lacks analytical rigor and hard clinical outcomes.
As stated by the source record.
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Clinicians should be aware that nearly one-quarter of patients with mILC report misdiagnosis, often as bone disease or benign breast conditions, and that diagnostic delay of ≥1 year occurs in nearly half of cases. The poor performance of mammography (20–25% detection) in this setting warrants heightened vigilance and consideration of alternative imaging modalities when mILC is suspected.
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Background: GI) tract, ovaries, urinary tract, and orbit-which may go unrecognized after a long disease-free interval. Some metastatic sites cause nonspecific symptoms, like abdominal/epigastric pain, with numerous published case reports of mILC misdiagnosed as gastric cancer. These atypical BC metastatic sites may lead to late and/or misdiagnosis, thereby delaying effective treatments. Objective: We developed a patient survey to investigate the patient-reported prevalence of delayed diagnosis or misdiagnosis of mILC and their potential impact upon treatment outcomes. Methods: A 45-question survey was developed and piloted with breast cancer researchers, clinical oncologists, and patient advocates. This IRB-approved survey was then distributed to patients with ILC. Analyses including data QC and visualization were conducted in R using descriptive statistics. Incomplete or inconsistent responses were excluded, and summary statistics were stratified by four common mILC sites to highlight subgroup differences. Results: mILC at initial presentation. Of the patients diagnosed with mILC, 32.1% (n=103) presented with other medical conditions at diagnosis. Misdiagnosis was reported by 26.2% (n=84) of patients with mILC, and of these cases, 31% (n=26) had ≥2 misdiagnoses. The top 5 misdiagnoses were bone-related condition (24.7%), benign breast condition (23.4%), another type of BC (7.8%), diagnostic delay (7.8%), and menopause related (5.2%). 44.5% of patients waited ≥1 year for an accurate diagnosis. 49 patients were treated for their misdiagnosis, and 6 received incorrect cancer treatments. The most frequently reported contributors to delayed or misdiagnosis were inconclusive imaging, providers' lack of ILC knowledge, and initial misdiagnosis. Of the 321 patients with mILC, 138 (42.9%) reported symptoms before diagnosis; the most common were back pain (16.5%), fatigue/malaise (14.9%), GI symptoms (11.8%), bloating (8.4%), and weight loss (8.1%). Although 40% of patients reported having a mammogram at the time of their initial misdiagnosis, ILC was detected in only 20.5% (24/116) of these cases, and mammography detected only 5 (25%) of the 20 de novo mILC cases. Patients reported additional diagnostic testing within 1-3 months of their initial mammogram, includingbiopsy, ultrasound (US), and MRI. 47.9% of patients were in active BC surveillance after curative intent therapy at the time of their mILC diagnosis; however, no statistical difference was seen in time to diagnosis versus those patients not under surveillance. Conclusion: Our survey results underscore the urgent need to improve diagnostic strategies for mILC. Addressing delays and diagnostic errors in mILC is critical to optimizing treatment strategies and improving patient outcomes.
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