Many women with lobular breast cancer have found LBCA after they were diagnosed. They want to help build a community among peers, to share the most current information about invasive lobular carcinoma (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 Leslie
In May of 2017, I was first diagnosed with lobular breast cancer. The diagnosis occurred over a startling 2 ½ months beginning with a “normal” mammogram, evolving into stage 2 lobular breast cancer, and ending with metastatic lobular breast cancer with numerous bone metastases. At 56 years, I had de novo metastatic lobular breast cancer. This very slow growing breast cancer had been growing for years, completely undetected by yearly mammograms. My intuition, rather than regular yearly mammograms, found my breast cancer.
In March of 2017, I had a 3D mammogram and received a call back for the left breast. After completing the call back, I received a “normal” mammogram report stating that I had heterogeneously dense breasts which “may obscure small masses.” Despite this report, I sensed that I had breast cancer in the right, not the left breast. I initially doubted my intuition because breast cancer seemed so unlikely. There was no breast cancer history in my family. I had breast-fed my children for an extended period, exercised, maintained a healthy weight, and followed a healthy diet. Furthermore, neither my husband nor I could feel any masses. Yet two weeks later, I went back to the doctor stating my suspicion.
Upon return, I was given an ultrasound. The technician could not locate any breast cancer and called in the radiologist who eventually found a tiny spot in the right breast which was biopsied. The report came back stating I had stage 2 lobular breast cancer. I had never heard of this type of breast cancer and was surprised to find it did not form a mass. I was also relieved to know that my cancer was found early enough so that a cure was possible. However, a month later an MRI showed my cancer was stage 4, not stage 2. The MRI had found numerous bone metastases throughout, spine, ribs, and pelvis. I was devastated that a cure was no longer possible.
For over 6 years, I have been learning how to live with this disease. The resulting physical and emotional challenges have humbled me and pushed me to grow endlessly. I am still learning to accept the uncertainty of cancer while trying to find some beauty in the ugliness of this disease. I wish I could say it was an easy path. Currently, my cancer is well controlled thanks to targeted drugs and a wonderful oncologist who is very familiar with lobular breast cancer.
The LBCA is an invaluable resource. From their library of taped conferences, I have gained a lot of knowledge about lobular breast cancer, which I use every hospital visit to ask better questions and make sure that I am getting the care I need. Reading other women’s ILC stories has helped me feel less alone and more supported. Their materials also have helped me better understand the imaging challenges for lobular breast cancer and given me the courage to advocate for effective screening. The LBCA has made living with cancer much more manageable.
Are you interested in telling others about your own lobular breast cancer story? Please email communications@lobularbreastcancer.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.
