My name is Courtney Fiore, a mother to three young boys, a wife, a Physician Assistant at a Dermatology practice, currently age 37 from Massachusetts. In February 2022, while in my third trimester of pregnancy, I found a lump in my left breast. I brought it to the attention of my OB, who ordered an ultrasound, which detected a 5mm hypoechoic mass, “probably benign”. Mammogram was done the same day for further clarification, and the mass did not show up due to the density of my breasts. I was declined the option to biopsy, as the “risks did not outweigh the benefits” during my pregnant state. I was reassured, and advised to return after I had the baby.
September 12, 2023 was a day I will never forget. Not only did they see the “same” 5mm spot, but another right next to it, and then closeby was a 14mm firm, fixed, spiculated mass. Now, this looked “suspicious” and I was asked to return the next morning for a biopsy. My gut knew at that moment it was going to be malignant. The days of waiting for those results were torture. I woke up on that Saturday morning, September 16, 2023, to a notification that pathology results were in my patient portal. My heart sank, and my hands were shaking as I opened it up, alone, lying in my bed, while my husband was downstairs playing with our children. Invasive lobular carcinoma. ER+, PR+, HER2-.
My world was spinning as I ran downstairs and handed my husband the phone to read the report. How could this happen to me? I myself am a medical provider, and for years was the one who took care of oncology patients. I’m not used to being on the patient side of the interactions. I am grateful that both the breast radiologist and my OB called me, on a Saturday no less, to review the results.
The following weeks were a blur of doctor appointments, bloodwork, MRI, bone scan, genetic counseling. I underwent a double mastectomy on November 1, 2023, initially with the plan that I would just need hormonal therapy afterwards. Luckily, my sentinel lymph nodes were negative, but the tumor size was estimated to be 5.5cm, involved all four quadrants of the breast, and the deep margins were positive. Turns out this happens in 1% of breast cancers. This puts me at stage 3 disease. As such a rare and atypical presentation, there really is not a clearcut algorithm on how to treat this. Typically, a tumor as large as mine is present in the lymph nodes, which would give a clear protocol to treat with chemo and radiation. However, my lymph nodes were negative. What would this mean? My care team presented my case at the tumor board, and ultimately my care team recommended that I do treat this as though it was node positive, so we decided to be as aggressive as possible.
I felt like the floor was ripped out from under me. I had just accepted the fact that I had breast cancer and opted to have both my breasts amputated. And now, I had to face such poison. Just four weeks post-op, I started chemotherapy (taxotere and cytoxan) on November 29, 2023. I made the difficult decision to shave my head the day before chemo started; I wanted to feel like I had some sense of control over this situation. I wanted to do this on my terms. I gave my husband and our kids the clippers, and let them shave mommy’s head.
Chemo absolutely rocked me. I experienced a rare hypersensitivity reaction to the taxotere, resulting in my throat closing and difficulty breathing. Rapid response teams were called promptly, and my symptoms luckily resolved with additional medications and I was able to complete the infusions. Because of that, chemo infusion day became a day I dreaded: SO many pre-medications (steroids, antihistamines, anti-nausea medications, anxiolytics). For usually a week afterwards, I felt awful and was barely present. Chemotherapy was followed by 25 rounds of radiation. My skin was painful, raw and peeling. This delayed my reconstructive surgery by several months.
The past 18 months since diagnosis have absolutely shattered me. I have been broken, both physically and emotionally. Time and time again, I have been given bad news, complications, and unexpected poor outcomes. What I have since learned is that lobular carcinoma often is undetectable on routine mammograms. I want more women to have access to breast MRIs, particularly when they have dense breasts. I am angry that this was not offered to me until AFTER I received my breast cancer diagnosis, despite finding a lump 18 months prior. I don’t want anyone else to suffer the way I did. I want to encourage advocacy; I want to push to change the narrative. My family is my WHY. Without them, I’m sure there would have been days that I wouldn’t have gotten out of bed.
Colton is almost 7 now, and he seems to be most affected by my cancer diagnosis. He will randomly say things like “I wish mommy didn’t have to go through all this” and “I wish cancer didn’t exist.” Me too, buddy, me too. Grayson is 4, and will playfully just ask “Mommy, are your boobs feeling better today?” or “can you grow your hair long again?” His innocence and sincerity always brings a smile to my face, even on the hardest of days. Drew just turned 3, but is always there to give me all the snuggles, hugs and kisses. I am hoping this is not as traumatic for them as it is for me. My hope is that they are all young enough that this will soon be a distant memory, something they do not actually recall details of as they get older.
But I do want them to know how strong Mommy is, and how hard she has fought to be here for them, hopefully for a very long time. Throughout this entire process, my husband Matt has been my backbone. He takes me to every appointment. He took care of my surgical wounds and drains after surgeries. He organized my daily medications. He gets up early with our boys every morning so I can sleep in. He gets them to daycare, pre-K, and first grade each day. He brings them to soccer, hockey, ninja warrior class, and baseball. He cooks, he cleans, he does laundry. I have without a doubt won the lottery of life just by having him by my side.
I do not know what my future holds. Stage T3N0M0 is not well represented in studies due to its rarity. My oncologist will not clearly answer my questions regarding prognosis and risk of recurrence. I am only 37 years old. I want to see my children grow up. I want to be around to see them graduate from high school and get married someday. I want to grow old with my husband. Instead, I am potentially being faced with my own mortality. I am trying now to just be more present and truly live life each day, not knowing if it could be my last. I spend less time scrolling mindlessly on my phone. When I hug others, I make a conscious effort to not be the first to let go. I am exercising more consistently. My goal is to travel more, and prioritize experiences and making memories with my family. My hope is to one day get more involved with breast cancer foundations, and use my personal story as well as my medical training to help with advocacy and education.
Finding LBCA on Instagram has helped educate me on the atypical presentation of invasive lobular carcinoma, and the limitations with relying on simple mammograms. As young women, especially with dense breast tissue, we need to advocate for additional imaging and closer follow up! My diagnosis was delayed by “monitoring a probably benign finding” for nearly 18 months, and I don’t want anyone else to suffer the same way.
