Many women with lobular breast cancer who have found their way to the Lobular Breast Cancer Alliance (LBCA) after they were diagnosed want to help build a community among peers, to share the most current information about ILC detection, treatment and clinical trials, and to raise awareness about this common yet understudied and sneaky breast cancer that needs more research. Sharing their stories is just one of those ways.

Meet Angie

My name is Angie, and I am a married mother of two adult children and live in Louisiana outside of Baton Rouge. I work as an RN Case Manager in the biggest hospital in the area and have been a nurse for 36 years. Cancer to me was something I knew about as a nurse in a somewhat peripheral way as it was not my specialty.

I was getting annual mammograms since having microcalcifications on a mammogram several years prior to my diagnosis. I was due for my next one in February 2017 but postponed it until May due to starting a new job. I “knew” they weren’t going to find anything, and it would be negative like the rest of them. However, this time they found “something” in the upper outer portion of my left breast, and I was sent for follow-up.

My breast specialist reviewed the film, did a breast exam, and found a slightly hardened area I had never noticed. She suspected ILC and biopsy confirmed it. My case was discussed with the tumor board, and a treatment plan was suggested.

My oncologist gave me two options for treatment and explained in detail my diagnosis of stage 3, grade 3 ILC and what 16/23 positive nodes with extension beyond the nodes meant for treatment. I was told about the unique features of this cancer, something completely new to me.

Finding the Lobular Breast Cancer Alliance

Of course, like any good nurse, I went on the internet and researched as much as I could. In doing so, I came across the Lobular Breast Cancer Alliance and found a wealth of resources specific to my diagnosis. This was so beneficial to me because this cancer behaves differently than other breast cancers and concerns I had were either clarified or explained in an understandable and helpful way.

I opted for the treatment my doctor more strongly recommended: 4 AC and 12 Taxol over five months and my radiology oncologist recommended 30 rounds of radiation. I survived and finished my treatment in March, 2018. Now on Arimidex for 10 years, I mostly experience fatigue and muscle aches.

I think promoting information about ILC is important as it so often is NOT felt on breast self-exam and is easily missed on mammograms. I believe mine may have been lurking there for some time, possibly missed in previous exams. You can find up-to-date information about ILC and a community of others helping to get the word out about ILC through the LBCA website.

Finally, for those diagnosed with ILC, get support, and be patient with yourself and those around you.

Would you like to tell others your ILC story? Please email communications@lobularbreastcancer.org to request more information on how to submit your story.