Stage IV HR-Positive Invasive Lobular Carcinoma: Amy's Patient Story
This breast cancer diagnosis at a glance
- Stage at diagnosis
- Stage IV
- Subtype
- Invasive Lobular Carcinoma
- Biomarkers
- ER-positive; PR-positive; HER2-negative
- Sex
- Female
- Spread to
- Spine; pelvis
- Treatment
- surgery
- Outcome
- Living With Cancer / Ongoing Therapy
Treatment course, step by step
- Bilateral mastectomy.
- Ongoing monitoring included routine circulating-tumor-DNA testing.
What happened, in summary
Amy had experienced back and hip pain since her early 30s. When it worsened in June 2022, she was told she was getting older. Four months later, she noticed an inverted nipple and immediately contacted her primary-care clinician. Mammography and ultrasound led to a biopsy that looked like breast cancer.
Amy underwent a bilateral mastectomy and was initially told that the cancer had been removed. Further examination found cancer in a lymph node, and a PET scan showed invasive lobular carcinoma in her spine and pelvis. The final diagnosis was de novo stage 4 invasive lobular breast cancer that was estrogen-receptor positive, progesterone-receptor positive and HER2-negative.
Amy added routine circulating-tumor-DNA testing to her monitoring after learning more about the difficulty of tracking lobular breast cancer on standard imaging.
Living in rural Montana shaped her advocacy. Amy began working to connect rural patients with subtype-specific information, support and research opportunities. At the time of her story, she was living with metastatic disease and encouraging hospitals and clinicians to provide patients with clearer information about lobular breast cancer from the start.
Where this story comes from
This is a lay summary of an account first published by Lobular Breast Cancer Alliance. Read the original in full
How we source and attribute stories Accuracy and limitations
These are lay summaries of published cancer stories, for information only. No two cancers behave the same way, and nothing here predicts your own diagnosis or replaces advice from your oncology team. Read the full disclaimer