Many women with lobular breast cancer who have found their way to the Lobular Breast Cancer Alliance (LBCA) after they were diagnosed 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 and sneaky breast cancer that needs more research. Sharing their stories is just one of those ways.
I grew up north of Seattle, Washington and have spent the last 21 years back in this area of the Pacific Northwest. I have had the blessing to be an at-home mom and raise all five of our children; currently ages 24 to 14.
I had yearly mammograms for 10 years starting at age 40, as I have a family history of breast cancer. In 2014, I had a mammogram every six months to watch for any changes in some microcalcifications. In March 2016, I knew something was wrong and began to search the internet for breast cancer symptoms. I had a history of cysts and felt one in my right breast that would not go away. I also noticed a slight dimpling in that same breast. At my next mammogram appointment, although there was a cyst, the radiologist focused on the additional grouping of microcalcifications and wanted to do a biopsy “just to make sure they were benign.”
The biopsy came back positive for ILC in my right breast, PR+ and ER+ and HER2-. And that was the beginning of a whirlwind of doctor appointments, biopsies, CT and MRI and bone scans, and genetic testing. Although my genetic testing came back negative, and the CT and bone scans came back clear, the tumor was larger than first diagnosed moving it to Stage 2 with some concern in the left breast as well.
Although lobular breast cancer doesn’t always respond to chemotherapy as well as other breast cancers, I had four months of chemo followed by a bi-lateral mastectomy. The chemo treatments didn’t affect the cancer much, and my diagnosis was restaged to a 3 on both sides due to 21 lymph nodes on the left side having ILC.
I underwent weeks of radiation after surgery in November 2017, which seemed to kill any leftover cancer cells. I am grateful for an amazing team of oncology doctors and for continued active treatment. However, we do need continued ILC research to establish appropriate cancer screenings so that ILC can be diagnosed earlier. Having said that, I am excited to see that Lobular Breast Cancer Alliance has begun funding ILC-specific research! I also hope one day better treatments that target ILC specifically will be discovered.
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.