Invasive Lobular Carcinoma: Daneen's Survivor Story

What happened, in summary

Daneen had surgery for lobular carcinoma in situ at age 32 and was monitored closely afterward. Tamoxifen was discussed as a preventive option, but she and her husband were trying to have a child after years of infertility and unsuccessful IVF. In June 1999, they learned that she had become pregnant naturally.

Daneen continued regular mammograms and ultrasounds. At her annual screening in September 2019, the mammogram appeared reassuring, but the ultrasound technician repeatedly examined an area in the outer part of her right breast. Daneen had dense breasts and later described the finding as a needle in a haystack.

Her first operation took place in October. The tumor had been expected to measure about 3 mm, but surgery showed invasive lobular carcinoma measuring more than 10 cm, without clear margins. On December 2, during an ice storm, Daneen underwent a double mastectomy with reconstruction. Her daughter and mother supported her through the operation and recovery.

After recovering, Daneen started radiation and began anastrozole. She had been taking it for 2 years when she shared her story. The experience strengthened her belief that imaging should be tailored to the individual, especially for people with dense breasts or a history that raises risk. She became committed to encouraging others to ask about different screening options and to advocate for better detection of lobular breast cancer.