Many women with lobular breast cancer have found the Lobular Breast Cancer Alliance (LBCA) after they were diagnosed. They 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 breast cancer subtype that needs more research. Sharing their stories is one of those ways.
My name is Kris, and I live in West Central Florida. I am a retired closed captioner for the hearing impaired. In 2013, I was in a motor vehicle accident. I sustained back injuries and severe sciatica, so I had MRI imaging on my lumbar spine. The radiologist report said I may have metastatic cancer in my spine, possibly multiple myeloma. After a PET scan, bone scan, and bloodwork came back negative, I was sent on my way.
In 2015 and 2016 I had further MRIs, which gave me the same results. In 2016 I also had a bone marrow biopsy to see if multiple myeloma was present but not showing in bloodwork. I also did a PET scan, bone scan, and tumor marker tests all with the same negative results. My tumor markers were high but not questioned by my doctor.
Two years later, in October 2018, I was having trouble eating a few bites before feeling full and nauseous. I lost 17 pounds very quickly. I went to my primary doctor who ordered an endoscopy that I had in April 2019. I got a call the next week asking me to please come into their office. I knew it couldn’t be good news.
I was told I had breast cancer that had traveled to my stomach. The gastroenterologist was shocked, and I’m grateful that he took samples to biopsy. It was only then that I was diagnosed with occult (cancer never found in my breast) de novo Stage IV lobular breast cancer. I have invasive lobular carcinoma (ILC) from my skull to my femurs in my bone, bone marrow, and stomach.
Sharing Her Story Via “Here All Year”
Last year I saw a notice that the Lobular Breast Cancer Alliance (LBCA) was working with the Metastatic Breast Cancer Alliance (MBCA) on its Here All Year Campaign. When I saw the notice, I knew I wanted to participate in the hopes of informing those who knew something was off to keep looking. I reached out to LBCA, and I was so appreciative to be able to participate. I really hope that my working with LBCA and MBCA helps at least one person in the future. Lobular is truly very sneaky.
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.