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 Kristel

Kristel’s experience with ILC compelled her to share information about ILC and support others as she was supported through her treatment journey. 

I’m from Wisconsin, am married, and have three children ages 13, six, and four. I am director of communications at a marketing agency. I was diagnosed with breast cancer when I was 38.

I found a lump in my breast just before Christmas in 2018. I went to the doctor for my yearly check-up in January, and they sent me for a mammogram and an ultrasound, which came back “normal.” A few months later, the lump was getting bigger and was painful. I then found another, smaller lump in the same breast. This time the ultrasound showed both masses, and a biopsy revealed both lumps as invasive lobular carcinoma (ILC). I decided to get a double mastectomy and needed 25 rounds of radiation.

Support for Herself and Others

I joined an ILC support group on Facebook, which is when I found out about the Lobular Breast Cancer Alliance. I was able to get information from both the group and the LBCA website to understand my options and make my decisions about treatment, and also had the guidance of the breast surgeon and oncologists at Mayo Clinic. After treatment, the social worker encouraged me to join a support group and talk with others that went through it all. I had been so busy doing and going places that I didn’t have time to stop and think about everything I was going through and process it.

When I realized there wasn’t a virtual support group I could join, I decided to start one. While it still sucks that I have to go through this, it’s so helpful to know that I’m not alone.

Would you like to tell others your ILC story? Send an email to communications@lobularbreastcancer.org to request more information.