My name is Mary and I am from Exton, PA, a suburb of Philadelphia. I am the mom to 3 grown boys ranging from 20 to 26 years old and have been married to my wonderful husband for 30 years. I am in healthcare market research and I specialize in oncology. I was attending a big oncology conference in Chicago in 2016 when I noticed my nipple was flat. I tried to dismiss it. A few days later on a Friday, I thought I felt a lump under my nipple. I quickly went to my OB/GYN office who suggested I go to get a mammogram immediately. I was thankfully able to schedule that from the parking lot and head right over.
I got a mammogram, which was negative, but then they also did an ultrasound. I remember thinking that it was taking too long! They left me alone too long. They said I had two areas plus lymph nodes that were highly suspicious for cancer. I was able to get a biopsy the following Tuesday and got my diagnosis on Thursday – Stage 2b invasive lobular cancer. I had two tumors, one quite large, and at least two lymph nodes that looked suspicious. I had chemo and then a double mastectomy followed by radiation. I have been on an aromatase inhibitor for the past 8.5 years.
While I have been working in oncology for many years, I did not know anything about lobular cancer. I read up on it but when I was diagnosed, lobular was basically treated the same as ductal. I did learn a lot from the Lobular Breast Cancer Alliance and was grateful to attend the ILC Symposium. I also got a lot of support and information from the lobular Facebook groups. I try to stay involved with the lobular community. I serve as an Imerman angel to mentor other women diagnosed with lobular. I also use my scientific background to serve as a patient advocate involved in research and have served as a reviewer for grants and also participated in workshops.
I wish we knew more about recurrence risk with lobular. I also wish we had more personalized treatment options for lobular and better imaging options so that it could be detected earlier and could also be monitored better for recurrence.
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