I’m Katie- a wife, mom, daughter, sister, friend, and nurse living in Cleveland, OH. I was diagnosed with stage 3 invasive lobular carcinoma March 2024 at the age of 38.
I was referred to the high risk breast clinic in 2023 due to a strong family history; since 2018 my mom and two sisters have been diagnosed with breast cancer. I thought I was being diligent having screening at 37 years old and my lifetime risk fell around 23%. My initial mammogram was read as normal, breast exam clear. I risked high enough for MRI but I had so much going on in life at that time, I didn’t make it a priority. Fast forward some months, I noticed a small lump in my breast; pea size if not smaller. “Lumpy” breasts were my normal so I didn’t rush to get it checked out. At one year though I made sure to get back to the high risk clinic.
This time my mammogram required additional images (I had significant calcifications and architectural distortion) and I mentioned the lump (that they could also feel). They did an ultrasound and this led to the recommendation for 3 biopsies- 2 spots in my breast (both masses measuring about 1 cm) and 1 lymph node. One week later pathology resulted: invasive lobular carcinoma, ER/PR+ Her2-, in both breast biopsies along with metastatic spread to the lymph node.
My immediate response was to take action and collect information. My role as a nurse in a large academic medical center allowed me to get in with a breast surgeon quickly. They recommended surgery first due to the lobular nature, followed by chemo and radiation since there was confirmed spread to my node. I spent lots of time scouring the internet while I finished my work up and came across LBCA’s website. I saw on the LBCA scientific advisory board (SAB) webpage that one of the LBCA SAB member clinicians was here in Cleveland. I made an appointment and after meeting with her I knew I wanted to stick with a lobular-focused provider.
My genetics were negative and the MRI showed an 80 mm area of enhancement. I had an FES PET prior to surgery to rule out metastasis (I knew about FES thanks to the information I found on LBCA’s page!) and thankfully it didn’t show anything outside of the breast and nodes we already knew about. I opted for double mastectomy with full axillary lymph node dissection and lymphovenous bypass.
From what I had learned about the nature of lobular and given my MRI results, I was prepared to be upstaged post op. Pathology showed a 5.5 cm tumor, extensive LCIS, and out of the 17 lymph nodes they removed, 15 were positive. That was quite the shock to me; I was prepared to be upstaged, not THAT upstaged.
If there’s any silver lining to having such significant involvement it was that my treatment plan was now very clear. I did dose dense ACT followed by radiation, am on two years of Verzenio along with Lupron and Letrozole. I’m now a few months removed from active treatment and am learning about my new normal on my maintenance medications.
My entire nursing career has been in women’s health, but until my own diagnosis I didn’t really understand the different types of breast cancers and the oddities of each. I am very open about my journey and, if nothing else, know at least a few women who have had screening due to my circumstances. I hope to continue my efforts in educating women about lobular breast cancer and advocating for lobular specific research, just the kind of work that LBCA is dedicated to. I do recognize that advocacy to raise awareness about lobular breast cancer is having an impact. I’m optimistic that sooner rather than later we’ll have better screening options, lobular-specific treatment options, and an overall better understanding of this breast disease – and maybe even as LBCA envisions – a cure.
Are you interested in telling others about your own lobular breast cancer story? Please email communications@lobularbreastcancer.org to request information about how to submit your story.
