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 Neda
My name is Neda, I’m 48, and I live in Seattle. In April 2020, I felt a large lump on my left breast. It was the beginning of the pandemic, and at the time, we had started a kindergarten pod at our house for my little girl. My husband urged me to see a doctor immediately vs. finding an excuse to put it off. His mother is a breast cancer survivor.
I had a mammogram and ultrasound, and neither showed signs of cancer. I was sent home and a few days later received a letter stating I had dense breast tissue and to come back one year later.
On March 17, 2022, I once again was in the doctor’s office after my mammogram. I texted my husband that I was going to be sent home with another letter indicating I had dense breast tissue. Instead, within one minute of an ultrasound, my doctor put her hand on my hand, looked deep into my eyes, and said, “Neda. You have breast cancer.”
A few days after my breast cancer diagnosis, I checked my armpits on the advice of a friend who is a nurse at a local cancer treatment facility. I found a second lump and went back for an ultrasound of my armpit. It was also cancer. According to the biopsy report, I had invasive lobular carcinoma (ILC), also called lobular breast cancer.
That April, I had a double mastectomy. It was my personal choice to proceed with a double vs. single. The pathology report indicated that I had a 6 cm tumor in my breast (stage 3 breast cancer), and two lymph nodes were involved. My radiation oncologists explained that it was likely that my tumors had been growing for more than eight years.
Educating Herself About ILC
Given my personality and my tendency to jump in deeply, I quickly started to educate myself. I read papers about ILC online and soon found the Lobular Breast Cancer Alliance (LBCA). I dove into the stories of others with lobular breast cancer on their website and consumed their online resources.
At the time, I thought I could volunteer with LBCA and reached out to them. Little did I know, I was going to have one of the most emotionally and physically challenging years of my life with little energy left for anything else.
By February 15, 2023, I had completed 25 doses of radiation and multiple surgeries. I had also completed 24 rounds of CMF chemotherapy, which is a combination of three chemo drugs. It was explained to me that I was a candidate for CMF, an older chemotherapy treatment that could be administered in “micro-doses” over many weeks because my lobular breast cancer was “lazy,” i.e., not very aggressive.
Today I have completed my acute treatments, and I am regaining my energy. I have started endocrine therapy and in about two months I will need to add a new medication, which is a targeted treatment for distant reoccurrence.
I have had to find ways to spin this emotional journey into a spiritual journey. This has included digging deep into meditation, slowing down, focusing on my self-care, journaling, and now finding my voice again. Now I have the energy to raise my voice to make others aware of the challenges of lobular breast cancer and the need for research to find better methods of detection and specific treatments to conquer it.
Watch Neda and her daughter talk about Neda’s lobular breast cancer diagnosis and the importance of ILC research.
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.
