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.
I’m Martha, a 57-year-old married mother of two adult children. I live in Michigan and am a licensed social worker employed as a community education coordinator. In my forties, I had multiple mammograms over a 10-year period, all of which came up benign despite the fact that I had a dense mass in the right breast that didn’t seem right to me.
After getting another benign mammogram at age 49, I asked for an ultrasound that also came back benign. I consulted a local surgeon who agreed there was reason for concern and did a surgical biopsy, which diagnosed my stage 3 invasive lobular carcinoma. It was 6 cm by the time I got a diagnosis.
In early diagnosis, I received copies of the biopsy report from pathology and studied up on ILC using Dr. Susan Love’s Breast Book. This prompted me to ask further questions about the imaging and why my cancer didn’t show up on these scans. I learned that ILC is illusive and disguises itself as dense breast tissue. I underwent neoadjunctive chemotherapy for four months and was advised to get a lumpectomy.
They thought the neoadjunctive chemotherapy had shrunk the tumor, but I could still feel the large, dense mass and already knew it wasn’t visible in imaging like that. During the lumpectomy surgery it became evident that the tumor was larger than thought, and the margins weren’t clear. Ultimately, I would need a mastectomy and chose to obtain bilateral mastectomies. For me, it was a sound preventative measure. I also followed up surgery with 30 radiation treatments and am currently on Tamoxifen for the recommended 10-year treatment to help prevent recurrence.
Using LBCA for Important Information
While the Lobular Breast Cancer Alliance wasn’t formed until years after my diagnosis, I look to it now for information about metastatic cancer (what to look out for) and for clinical research trials I could take advantage of if I were to undergo a recurrence. I also subscribe to their newsletter.
I would like to see more effective diagnostic measures for ILC, since it masks itself and is hard to distinguish from other dense breast tissue. I believe there is a need for more information on disease progression post-treatment, and more information on research trials and such for ILC patients who have metastases or who are trying to prevent recurrence.
Would you like to tell others your ILC story? Please email firstname.lastname@example.org to request more information on how to submit your story.