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.
The Webster definition of gob smacked: Utterly astounded, speechless, overwhelmed.
My name is Eileen. In September 2018 my plane had just landed, and I turned off airplane mode on my phone. It rang immediately. I answered, expecting it to be one of my family calling. Instead, I listened to my radiologist’s voice and felt that I had entered the Twilight Zone as she told me, “Eileen, you have cancer.”
As I processed the information, I continued to walk off the plane. I was numb but wanted to get out of the way of other passengers. People were everywhere, but I felt so alone. I didn’t know what to do. Within minutes, I realized I’d left my suitcase on board. I was gob smacked!
The next few weeks I went for consults with breast surgeons and plastic surgeons. I was advised that I would need a lumpectomy and five weeks of radiation. I read everything I could about what to expect. To be safe and make sure this was the best next step, an MRI with contrast was scheduled.
Initially my left breast contained an invasive lobular carcinoma (ILC) line directly above the nipple. Now I braced myself as I listened to my breast surgeon tell me that the MRI showed five “sneaky” ILC lines through the left breast and three more on the right side. A double mastectomy was inevitable.
Depression became my close friend. Two weeks later, I was being rolled into the operating room and a new chapter of my life had begun.
My incredible family welcomed me back into the hospital room, and the next day I was sent home with layers of gauze, bandages, and drains. Necrosis would become a part of my life for the next two years as now I simply could not heal. As a result, seven more surgeries awaited me.
Since ILC spreads in a stealth-like manner, my doctor was concerned when a growth was noticed on my Fallopian tubes. Now an oophorectomy became surgery #9. The biopsy showed no malignancy: but I still was being watched since malignant cells were found in my left lymph nodes.
Learning Everything about ILC
Months of healing filled the next two years and voracious reading awaited me. I was going to learn EVERYTHING I could about ILC. I listened to podcasts from the San Antonio Breast Cancer Symposium (SABCS), I read articles, and I learned from websites. As I took my walks along the Jersey Shore boardwalks listening to lectures and support groups, one morning I heard commentary about the Lobular Breast Cancer Alliance. After going to LBCA’s website and reading the information they offered, I finally felt safe and no longer alone.
I truly am an optimist, but I remain hesitant on saying the words “cancer free.” I feel comfortable with the acronym N.E.D. “ No Evidence of Disease.” Moving forward, may I be blessed to hear that from my oncologist every four months!
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.