My ILC Story – Carol

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 Carol

My metastatic ILC story began in the Fall of 2010. It was the year I retired from a 45-year nursing career, the year I turned 65, and the year I was looking forward to having more free time. It all pretty much went down the drain on September 11, 2010. I pursued an itchy sensation deep in my left breast while showering and found a long hard tissue mass. I knew instantly this was not normal tissue, and most likely breast cancer!

An appointment with my gynecologist confirmed the mass. A breast specialist examined me, and immediately walked me to the radiology department for bilateral breast biopsies. I learned I had a large lobular tumor on the lateral side of the left breast. The second biopsy also came back positive with a small ductal tumor in the right breast.

My oncologist said the lobular tumor, 7.5 cm long, had been growing for years. All my mammograms came back negative for 25 years! I didn’t know I had dense breast tissue that cancelled out the tumor because they both appear as whitish clouds. My oncologist said it’s like looking for a “snowball in a snowstorm.”

Following a PET scan and breast MRI, my diagnosis was finalized, Stage 4 de novo breast cancer with bone metastasis in eight locations. Good grief! Chemo couldn’t happen soon enough! Four rounds of aggressive chemo were followed by 12 weekly doses of Abraxane and Avastin. My platelets dropped and never came back, so the Avastin was discontinued after the fourth dose. I was in complete remission at the end of chemo, per a PET scan, and placed on daily Letrozole for maintenance. It lasted 10 years, a darn good run!

Following progression in my bones last Fall, I was placed on the ‘one-two punch’ of Kisqali and Faslodex. At six months on this regimen, my PET scan shows no new activity with good clinical response. Hurray! I’m NED (i.e., no evidence of active disease)!

After I was diagnosed, I went to several credible websites to learn all I could. Unfortunately, the Lobular Breast Cancer Alliance and its website didn’t exist 11 years ago. I learned about LBCA though a link on Facebook and was inspired by their mission statement. I liked that, as an alliance, there is collaboration between patients, physicians, researchers, and others. This dynamic keeps everyone on the same page and gives all a voice.

As a person with metastatic ILC, I feel strongly that we need to continue educating other women. We’ve come a long way, but I get the sense that even basic information hasn’t been digested by the masses.

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

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