My name is Akila, I live in Tampa, FL with my husband. I have worked in financial institutions for over 30 years. From age 40, every year I had a diagnostic mammogram, and the result was “Dense Breast – No Findings”.

In 2022, I was with my daughter in New Jersey to help her with her pregnancy. I noticed some wrinkles below my breast which looked like the breast is separated from the skin. She scheduled an appointment for me with her gynecologist. The doctor ordered a mammogram to be done immediately. The mammogram showed suspicious findings different on each breast. I had stereotactic biopsy done on the left side and ultrasound guided biopsy on the right side. The biopsy result indicated Lobular carcinoma in the right breast and Ductal carcinoma in the left breast. MRI revealed that the left breast had both Ductal and Lobular carcinoma in 3 places and a tumor over 4cms on the right side. Based on the imaging and MRI results my surgeon recommended the right breast be removed and that a lumpectomy be performed on the left.

Fortunately, I opted for bilateral mastectomy as the surgical pathology showed cancer in 5 different areas in my left breast. After surgery an FDG Pet scan did not show any metastases and I was scheduled to go through chemo and radiation. Before starting the chemo I had an FES PET scan done. It showed bone metastases throughout my body in innumerable places. A bone biopsy confirmed that the metastases were lobular. These led my medical oncologist to change my treatment plan and to offer oral medicine Kisqali and Letrozole and a Xgeva injection for bone instead of chemo.

I got to know about LBCA through the virtual metastatic lobular breast cancer support group that is provided by Share Cancer Support and led by LBCA volunteers with metastatic lobular breast cancer. LBCA has provided answers for several of my questions about the lobular cancer type, including the difficulty detecting and identifying the cancer. I wish that we can find ways to advance imaging and testing methods so it is easier to catch lobular breast cancer at an early stage.

I am now working closely on a project with a cancer center on clinical trials as a patient advisor and I recently got involved with LBCA’s Local Advocacy Team activities and am trying to contribute. Thanks to LBCA for translating the patient information into Tamil – my native language!

For someone facing a lobular breast cancer diagnosis, remember it is not your fault and there is no easy way today to diagnose Lobular cancer. Advocate for yourself and try to focus on making sure you have a good quality of life.