Because of my family history, mammograms had been part of my annual exams since my 30s and my 2021 appointment was no different…until the call back request for additional imaging….then the progression of more imaging and scheduling a biopsy…all the while I could not feel or see anything different about my right breast. No lump. No distortion. Nothing. Maybe some prior itchiness or an occasional hotness in the area, but could this really be breast cancer?
After the waiting and the worry, it was confirmed: Invasive Lobular Carcinoma. What does this mean for me? For my daughters? By the time I had my first appointments with the oncology team, I had already spent too much time scouring the internet. I didn’t even know breast cancer had types. Why are the details lacking for lobular breast cancer? And after discussing my treatment options, it sounded like even though lobular was a different type, the treatment protocols were the same? All of that was unsettling. Here I was thinking that as soon as I had a treatment plan, I could feel confident, in control of the situation, and ready to tackle this.
Following my bilateral mastectomy and Tamoxifen, then hysterectomy (yeah, that too), trying all AIs, I am now back on Tamoxifen. I wish I felt more confident in that daily white pill, but knowing that ILC tends to recur later…and the ILC specific research so lacking, and the only monitoring being, “let us know if something bothers you” persists… the wondering and worrying can be overwhelming.
Finding LBCA and the online community of others with ILC made me feel like my old self. The information, resources, factsheets, others’ ILC stories, women with a similar diagnosis…all helped me know that in spite of the details lacking for lobular at this time, that there is an organization working hard and fast to change that. My moments of fear and uncertainty…my why me-s?… were turning to what can I do to help? How can my ILC diagnosis be used for good? LBCA was there not only with the information and answers my brain needed, but also answering the “yeah, but what are you gonna do with this?” questions. Because of LBCA, my ILC has a sense of purpose and I feel like I’m in the driver seat of my diagnosis… and if I’m going somewhere, I like to be the driver.
Are you interested in sharing your own lobular breast cancer story? Please email communications@lobularbreastcancer.org to request information about how to submit your story.