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.
My name is Brenda. I live in Oakville, Ontario, and work for the Toronto Stock Exchange. I have a teenage daughter and a son at university.
In 2017, I found a lump in my breast. The doctors told me that the lump was just a cyst, but that the mammogram identified an area of calcification that they continued to monitor, repeating the mammogram every six months for the next five years. I was in my early 40s at the time, and normally mammograms don’t begin in Canada until age 50.
Fast forward to May of 2022 when my journey with lobular breast cancer began. While at my routine mammogram, the compression from administering the mammogram ruptured the “cyst” and sent me to my knees in pain.
One week later, I went to see my family doctor as my breast tissue felt very different. I was concerned the test may have done some damage. At that time, my doctor agreed that the mammogram likely ruptured the cyst but that the fluid would just get reabsorbed by my body and not to worry. The doctor said my test was clear, and I would go back for another mammo in six months.
As the November mammogram date was approaching, I went again to see my doctor in hopes we could find an alternative test given what happened at the last one. Upon her examination, she finally acknowledged the breast tissue did not look right and sent me to see the specialist/surgeon who ordered a biopsy right away.
On November 28, 2022, at the age of 49, I received the dreaded call. I had breast cancer…and not the typical kind…I was in the less than 15% category with a subtype called invasive lobular carcinoma (ILC). The pre-surgery screenings and tests also grossly underestimated my condition. The mastectomy revealed a 10 cm tumour with 6 of 8 positive lymph nodes. I was in shock.
Since then, I have had chemo, radiation, an oophorectomy, and am currently being treated with anastrozole and a CDK 4/6 inhibitor.
Finding the Lobular Breast Cancer Alliance
I can’t begin to describe how grateful I was to find the LBCA. I went from feeling completely alone to being able to connect with women who truly understood what I was going through, and I found information I so desperately needed at a time like this. I have learned how to advocate for myself and the knowledge gained from the LBCA network has empowered me to ask the right questions and continues to help me navigate a very intimidating health care system.
I was fortunate enough to attend the ILC Symposium at the end of September 2023 and was so encouraged to hear about all the research and advancements being made around the world.
Thank you LBCA for taking such an active role in spreading awareness and spearheading many initiatives that are making a difference!
Are you 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.