My name is Karen and I relocated to Honolulu, HI from Seattle, WA in July 2023 to work with a local health system as its oncology service line director. Two months after arriving, I found a lump in my breast, at the age of 43. I had a clear screening mammogram 9 months prior. I have a family history of young breast cancer (negative genetic testing) and dense breast tissue. I didn’t have primary care yet in Hawaii, so I went to urgent care for evaluation and I’m so grateful the physician there agreed to order an ultrasound, which started my diagnostic work-up.

As the incoming oncology director, I began meeting my new team members for the first time in their exam rooms. I got to talk directly with my pathologist as he explained to me how ILC is “sneaky”.  Because imaging showed many tumors covering a large area, mastectomy was
my only option; I chose a double mastectomy.  My final pathology was an 8.5cm ILC (LCIS was also present), ER/PR+, HER2-, grade 2, and 4/4 lymphnodes with isolated tumor cells (technically, this is node negative). This represents pathologic stage 2B, but prognostic stage
of 1B.

I underwent 3 months of chemotherapy and then had reconstruction and am now on endocrine therapy and a targeted therapy. I’m doing well, walking 3-5 miles daily, and figuring out what my “new normal” is (hellooo, menopause!). I’ve gained a perspective at work I hoped I’d never have, but I will use it to help the cancer community in Hawaii.

Early on, I found resources online to learn about my cancer and to inform my decisions. I’m so glad I found LBCA through Facebook to help me educate my family and friends about ILC and what makes it unique and hard to find on screening. My goal in sharing my story is to ensure
everyone is aware that a clear screening is good, but being aware of changes in your body and seeking answers is equally important.

I would like to see more research for ILC in detection and treatment options. Being in a small state in the middle of the Pacific means that research options for patients are limited and traveling to participate in research is logistically prohibitive for most. I’m so grateful to those
who participated in research before me to help inform the best treatment options for me today, but I know we can do better.

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.