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 Stephanie
My name is Stephanie. I’m 68 years old and a retired registered nurse living in Virginia Beach, VA. In 2004, I went for my routine mammogram. I had no family history of breast cancer. The mammogram saw something on my right side. A general surgeon first did a needle localized biopsy, then a lumpectomy with sentinel node biopsy. I was diagnosed with ductal carcinoma in situ on the right side and extensive lobular carcinoma in situ. I underwent a single mastectomy and reconstruction followed by chemotherapy and five years of Tamoxifen.
After my treatment, I had yearly mammograms and follow-ups with both the breast surgeon and the oncologist, but no additional imaging was ever done on my right side. Fast forward to July 2018. I was fixing up my son’s apartment. This included moving things and hanging curtains – the typical mom stuff. When I came home, I felt like I pulled something. I had pain and felt a lump on my right axilla that was sore to the touch.
After a few weeks, I made another doctor’s appointment. Following a biopsy, I was diagnosed with ductal breast cancer. My medical team was not in agreement about what treatment I should receive. CT scans ordered showed no metastasis.
Frustrated with what I felt was inconsistent information, my husband and I arranged for a second opinion. I underwent a round of tests and scans, which included my first MRI. The MRI identified not only the lymph node mass in my right axillary area, but also an area on the front wall of my chest that was likely cancerous, and much more of a concern.
In October of 2018, I had to undergo a 12-hour surgery to remove multiple lymph nodes, four ribs, and the lower part of my sternum. Unfortunately, the surgeon was unable to get clean margins as the spreading was too extensive. It was after this surgery that the doctors told me I was positive for invasive lobular carcinoma (ILC). Needless to say, this was very depressing to hear.
Learning More About ILC
After this diagnosis, the doctors told me more about ILC and explained that this was why my cancer wasn’t identified earlier and why it is sometimes harder to get clean margins when removing ILC tumors. As a result of that conversation, my husband and I did extensive research on this type of cancer.
It was my husband who found the Lobular Breast Cancer Alliance as part of his Internet search. The website, lobularbreastcancer.org, has been an invaluable resource in understanding this unique form of cancer. It really put the full picture in place in regard to ILC.
Since my surgery in 2018, I have had treatment with Ibrance and Femara and have had to undergo additional surgeries. Unfortunately, past scans have revealed a cancer recurrence in the initial area.
My most recent bone, abdomen, and chest scans that were taken earlier in February (I’m sure I glow in the dark by now!) were good revealing no new cancer growth. I will continue on Femara, but no chemo! I was shocked but so pleased.
Get the Word Out
It is so important that more people become aware of ILC and the unique characteristics of how it evades routine imaging. With more awareness, through the awesome work of LBCA and others, there will be more of an emphasis on improving imaging techniques, leading to better outcomes. The LBCA has been great in providing much needed information to those of us impacted by ILC. My husband and I can’t thank them enough.
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.
