What happened, in summary

Ann was diagnosed in February 2017 with two large ER-positive, HER2-negative invasive lobular cancers in her right breast. The tumors had not been felt and had not appeared on mammograms, and cancer was found in 17 lymph nodes. She underwent right mastectomy, lymph-node dissection, and reconstruction, followed by AC-T chemotherapy, radiation, and five years of an aromatase inhibitor.

In 2022, anemia and worsening reflux led to further evaluation. Breast-cancer antigen tests were elevated, but two PET scans were negative. By mid-2023, Ann had severe abdominal pain, weight loss, vomiting, constipation, and diarrhea. A CT scan in the emergency department found complete bowel obstruction. Emergency surgery showed extensive metastatic invasive lobular breast cancer embedded in the peritoneum and intestines, and an ileostomy was necessary.

The recurrence left Ann angry that she had not understood how invasive lobular cancer can spread to the abdomen and may be difficult to see on PET imaging. After nine months of treatment, she pursued ileostomy reversal with a surgeon who believed it could be successful. The reversal gave her more freedom to travel, while peer support from other people with lobular breast cancer helped her understand and live with metastatic disease.