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 Lisa
My name is Lisa, and I am married with three sons and seven grandchildren. I live in Kentucky where I worked for 27 years as a social worker/bereavement counselor at a hospice. In 2020 I had just left hospice to work at a school when I learned that my invasive lobular carcinoma had recurred, and I had metastatic ILC.
Back in 2017, I had noticed that my nipple was inverted, and six weeks later I felt a swollen area in my right upper breast. I didn’t realize that changes in the nipple were a sign of lobular breast cancer. However, it did make me more aware so that I was able to find the raised area.
I acted immediately and called my doctor. After a mammogram, sonogram, and biopsy, I was diagnosed with lobular breast cancer in less than two weeks. They thought the cancer was stage 1, grade one, and my doctor recommended a bi-lateral mastectomy with reconstruction. The surgery took place six weeks later.
After surgery I was told the cancer was stage 2, grade two. The tumor was 5.4 cm. As they thought I had a low chance of recurrence, I was given Tamoxifen. I really thought I was in the clear, so I didn’t do any further research.
A Metastatic ILC Diagnosis
I started having pain in my back three years later. I thought it was arthritis, and an X-ray in March 2020 didn’t show anything. I blame myself, because I didn’t know the cancer could come back in the bones and skip the breast area. The pain was so bad I told my doctor about it in October. She ordered a CT scan that was suspicious for cancer and then a PET scan that verified metastatic ILC.
If I could change anything, I wish I had been more informed about ILC. That’s why I believe educating yourself and other women about the unique characteristics is so important.
I found the Lobular Breast Cancer Alliance and its website through an internet search. Unfortunately, I didn’t find the website until after I was diagnosed with metastatic ILC.
As someone living with metastatic ILC, I understand that it’s important to know that not all breast cancers are the same. Also, different treatments need to be researched to find the best options. I now reach out to family and friends about self-breast exams and what to look for as well as the importance of routine mammograms. Letting them and others know that ILC doesn’t always show up on the mammogram is so important. Everyone needs to be their own advocates.
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.
