Stage IV Invasive Lobular Carcinoma: Nikoo's Patient Story
This breast cancer diagnosis at a glance
- Stage at diagnosis
- Stage IV
- Subtype
- Invasive Lobular Carcinoma
- Biomarkers
- BRCA1/2 negative; PIK3 mutation reported on liquid biopsy
- Sex
- Female
- Spread to
- Peritoneal/abdominal lining; abdominal lymph nodes
- Treatment
- surgery, radiation, hormone therapy, targeted therapy and a clinical trial
- Outcome
- Setback / Progression
Treatment course, step by step
- 2003 Stage I lobular breast cancer was treated with 2 lumpectomies
- Completed 30 radiation sessions and took tamoxifen for 5 years; BRCA1/2 testing was negative
- In 2022, abdominal surgery found breast cancer spread across the abdominal/peritoneal lining, and ovarian cancer was ruled out
- A port was placed while urgent treatment was being considered
- After transfer to a lobular breast cancer specialist, treatment included a CDK4 inhibitor, liquid biopsy testing, PIK3-directed treatment, and about 6 months in a Phase 1 trial
- Exact drug names after tamoxifen were not clearly stated.
What happened, in summary
Nikoo was 42 in 2003 when a normal mammogram missed the cancer her doctor felt during a breast exam. A biopsy confirmed invasive lobular breast cancer, a type that can be difficult to see on standard imaging. The tumor was small, about 0.9 cm, and she was treated with 2 lumpectomies, 30 radiation sessions, and 5 years of tamoxifen. BRCA1/2 testing was negative, and she was told the cancer was unlikely to return. For years, follow-up imaging stayed clear. In January 2022, new GI symptoms made Nikoo feel something was wrong, even after a prior colonoscopy and endoscopy had been normal. An abdominal ultrasound led to urology workups and bladder biopsies that showed inflammation but no clear answer. When symptoms persisted, she pushed for more evaluation and agreed to gynecologic surgery. During abdominal surgery, doctors found invasive lobular breast cancer spread across the abdominal/peritoneal lining, and ovarian cancer was ruled out. Nikoo then sought a lobular breast cancer specialist. Her care included a CDK4 inhibitor, liquid biopsy testing, later treatment guided by a PIK3 mutation, and a Phase 1 clinical trial. As of October 2025, she was 3 years into a Stage IV recurrence and using her experience to push for better recognition of lobular breast cancer.
Where this story comes from
This is a lay summary of an account first published by The Patient Story. 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