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 Julie

My name is Julie. I’m a wife to a great husband and mother of three of the most amazing kids in the world. I am also an Emergency Medicine Physician living in Maryland. Life was busy and full of wonderful things — family, sports, travel, friends, work — and then it all came to a screeching halt when I was diagnosed with lobular breast cancer in October 2019.

We had just gotten back from a trip of a lifetime to Italy and as I was getting out of the shower, I noticed a small indentation on my outer right breast. I had a horrible feeling that this was not good. I felt sick to my stomach. I called my good friend who is an obstetrician who set me up for testing.

The mammogram didn’t show much, but ultrasound and biopsy followed. It WAS cancer. My heart stopped. All I could think of was my babies. My youngest was 18 months old when I was diagnosed. Would he remember me? Will I get to see them grow up? I couldn’t get the tears to stop.

I was initially staged 2A, but every time I went to the hospital, I got worse results. First it was that it had spread to my axillary lymph nodes. Then I was BRCA2, which is associated with multiple other cancers and also could be passed down to my beautiful innocent kids.

A Metastic Lobular Breast Cancer Diagnosis

I went through chemo, surgery, and radiation. I thought I was done. But after radiation was completed, because of BRCA, I had a screening MRI to check my pancreas. My pancreas was fine, but the cancer was seen in my bones. BAM. Stage 4 lobular breast cancer. “Breathe… just breathe,” is all I remember thinking.

I was crushed. I was terrified. So many questions. So much unknown. I was told I had 3-5 years left to live and to get my affairs in order. I could not accept that. I needed hope, I needed positivity, and I needed a team who believed that I could live as much as I believed I could. I read everything possible that would give me HOPE.

Honestly, I had never even heard of invasive lobular carcinoma. All I really knew about was ductal carcinoma. When I was looking for other people’s stories of breast cancer and trying to find people that I could relate to, who also had my type of cancer, it was hard to find many that had lobular. I found that there isn’t a whole lot out there about it in general.

Finding the LBCA

Then, I came across the Lobular Breast Cancer Alliance (LBCA), and I learned so much. I loved that they were advocating for lobular cancer to be seen as the unique entity that it is, and not just to be grouped into all other breast cancers. I loved how they promoted research that looks at targeting the unique qualities of lobular breast cancer to hopefully create treatments that are more effective for this type of cancer in the future. I loved that LBCA showed stories of people living with this and giving us all hope.

I refused to focus on the negative. I deepened and leaned on my faith, without which I NEVER would have been able to get through any of this. I found an oncologist who has incredibly high hopes for me, and I expanded my team and now incorporate traditional Chinese medicine into my treatment. I try to exercise and eat well. There are many different avenues of healing. USE THEM ALL.

My advice: lobular is sneaky. It was in my bones, and I had no bone pain. It was probably there for years. I never had a lump. I was active, healthy, and happy. I was 36 and never imagined anything like this could ever happen to me.

It’s now been two years since my lobular breast cancer diagnosis, and one year since I was told it was in my bones. But here I am, THRIVING with stage 4 lobular breast cancer. Cancer has forced me to slow down and treasure what’s truly important. I am so excited to see what the future holds for me, and I have so much hope. There is always hope.

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