Many women with lobular breast cancer have found the Lobular Breast Cancer Alliance (LBCA) after they were diagnosed. They 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 breast cancer subtype that needs more research. Sharing their stories is one of those ways.

Meet Suzanne

I’m Suzanne, 57, married with two grown daughters, and I live in Delaware near the Lewes and Rehoboth beaches. As a family we have been very active in fitness and sports throughout our lives. Currently, I practice as an occupational therapist, but I have taken some time off to complete my treatment in Massachusetts.

I will never forget the fateful night in March, 2021 when I found a small lump in my left breast. I was having some pain in my left pectorals muscle (from strength training), so I put my hand there and that’s when I found it. I called my family doctor who set me up for a diagnostic mammogram and ultrasound. The breast surgeon performed a fine needle aspiration. I was told the cells were normal.

The following few months were busy, but in July I noticed the lump in my left breast felt bigger. I had a follow-up mammogram and ultrasound on both breasts and the lump on the left had doubled in size.

I received the call on July 29. “You have breast cancer. It is invasive lobular carcinoma (ILC).”

ILC Isn’t Like Ductal

I was devastated, shocked, and scared. It took me a few days and many conversations with family and friends to pull myself together and get in fight mode. The next few days were spent crying, talking, and reading about ILC. It wasn’t like ductal. It was “sneaky” and “hides in the breast.” According to the doctors, I was incredibly lucky to have found the lump.

I decided to go to a cancer center in Massachusetts for my surgery and treatment. I trusted my team there. They took the time to go over every detail, answer questions, and were available whenever I needed them.

In September, after my lumpectomy, sentinel node biopsy, and lymph node dissection, my pathology report indicated I had two very small ER+ ILC tumors and no lymph node involvement. Four weeks of radiation was prescribed, followed by at least five years of anti-estrogen medication and treatment for my newly diagnosed osteoporosis.

Finding LBCA

I found myself searching to find more information. In my search, I found the Lobular Breast Cancer Alliance (LBCA). The organization’s information about lobular breast cancer is reassuring because most research I had read up to then had focused on ductal carcinomas.

I learned that ILC often presents differently and is harder to find, and sometimes resists treatment, so more research needs to be done for better diagnostic tools, prevention, and treatment that is specific to ILC. Women need to be more educated and advocate for themselves. I feel that LBCA helps us learn as much as we can about ILC and how to fight for more ILC-specific research.

“You have cancer” is not something anyone ever wants to hear. My advice to those who hear those dreaded words is to empower yourself with knowledge; trust your gut; know your body; love your healthcare team; lean on your family and friends for support; use the many support groups out there to learn, and resources like those of the LBCA; and don’t be afraid to advocate for yourself and others.

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