Meet Connie

October 2021 I went in for my annual mammogram. A few days later I received a call back that something suspicious was seen that needed to be rechecked. After more imaging, an ultrasound guided biopsy would indicate I had Invasive Lobular Carcinoma and would need to meet with a surgeon.  After meeting with a local general surgeon, my husband and I decided we would go for a second opinion. 

In early December I met with a surgeon who ordered an MRI and a CT Scan. The results that came back were alarming to the surgeon due to the size of the actual tumor. It appeared to be stage 3. With Lobular being slow growing my tumor had been “brewing” (his words) for a while. I explained how I had a mammogram annually and just did not understand how I was fine last year then this year I was not. Rewind 9 years prior, I did have 3 places bi-laterally that were lobular carcinoma in situ or LCIS. These three areas were surgically removed and at that time I was told I would have less than .01% chance of it ever recurring.

Back to the present. The surgeon had told us that due to the tumor size a double mastectomy would be best. In January 2022 I had a double mastectomy, mapping of my lymph nodes, port placement and plastic surgery for expanders. Following this surgery, we were told I had stage 3a, 4 of 5 lymph nodes were positive, my tumor was over 4 ½ cms in size and my other breast had a lot of LCIS.

My oncologist prepared us for what was to come next: 6 chemotherapy treatments, cold cap (a wonderful new treatment to help prevent hair loss), reconstruction surgery, removal of my ovaries, 30 rounds of radiation and another reconstruction surgery. For the last two years I have taken Verzenio which is a low dose oral chemo, anastrozole and have had 6 rounds of bone infusions.

This coming November 2024, I will end my Verzenio treatments and have one more year of bonus infusions left. I will also be joining a new case study that will continue to follow me for 10+ years.

I was initially told by my oncologist that had my bi-lateral LCIS been found today, a double mastectomy would have likely been the recommendation. This just goes to show how much more is known now about LCIS and its relationship to invasive breast cancer! I pray the study I will begin in November will aid in future early detection of a recurrence  and will identify a treatment that can be less invasive and more preventive.

I tell every female I know: do not skip an annual exam. If I had skipped mine, my circumstances may look a lot different right now.. Also, don’t be afraid to go for second opinions. And seek out non profits for breast cancer patients, like the Lobular Breast Cancer Alliance. They have wonderful tools and resources you will need and want! Last, be patient throughout your treatment plan and trust the process.

I am so very thankful for my medical team; their knowledge, wonderful staff and educational tools they provided. I am also grateful for the Lobular Breast Cancer Alliance in all their efforts to help educate about and promote more research into lobular breast cancer to prevent and fight this terrible disease.

Are you interested in telling others about your own lobular breast cancer story? Please email communications@lobularbreastcancer.org to request more information on how to submit your story.