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.
My name is Daneen, and I am 57 years old. I work as a director of disability/accessibility services for a community college in Connecticut. When I was 32, I had surgery to remove a lobular carcinoma in situ (LCIS). I went to many doctors and was given many different thoughts about my diagnosis. I wasn’t sure what were the best preventive measures to take.
My doctors always monitored me closely. Some suggested Tamoxifen, but we were trying to have a family and that wasn’t an option. We had been going through years of unexplained infertility and had started IVF but with no success. In June of 1999, we got the news that I was pregnant naturally with our daughter. I had been having mammograms and ultrasounds since I was 32 years old and only stopped while I was breastfeeding our daughter for six months.
Almost Two Decades Later
Fast forward 19 years. In September 2019 I went in for my yearly mammogram. On this beautiful Fall day in Connecticut, all seemed ok with the mammogram. Then the technician said, “Let’s try and get you in for an ultrasound.”
During that ultrasound, the sonographer kept going over one area on the outer quadrant of my right breast. I had dense breasts, and I remember thinking, “WOW, she is really looking at something.” I strongly believe the right imaging and the skill of the ultrasound technician is what made the difference in finding my lobular breast cancer that day. It was like finding a needle in a haystack.
My first surgery was in October and instead of being 3mm as thought, the tumor was over 10 cm with no clean margins.
During that time, I also found the Lobular Breast Cancer Alliance (LBCA) while searching the Internet, which was such a great resource to get information and connect with others.
I had my double mastectomy and reconstruction on December 2 during an ice storm. My daughter and my mother were by my side during the mastectomy and recovery. Three generations of women coming together to face the beast of invasive lobular carcinoma (ILC)! After recovery, I started radiation and have been on Anastrozole for two years now.
My goal is to be an advocate for women seeking treatment for ILC and to encourage people to advocate for different kinds of screening. One size doesn’t fit all. I believe having that ultrasound saved my life! I am so thankful for LBCA, and I want to help support it and raise awareness of ILC any way I can.
Interested in telling others about your own lobular breast cancer story? Please email firstname.lastname@example.org to request more information on how to submit your story. For more information about lobular breast cancer or to make a gift visit lobularbreastcancer.org.