How it started…

I was first diagnosed with Invasive Lobular Carcinoma in 2014, and it has been one wild ride. At that time, I was stage 2b, with several locations of tumor in my left breast and three positive axillary lymph nodes on that side. I was rediagnosed in 2020 with both a local recurrence to the left breast and chest wall, and oligometastatic breast cancer to my right T6 rib. Then, in 2024, I was diagnosed with what was labeled terminal metastatic breast cancer to my brain, including a leptomeningeal metastasis, and was first given, 2-3 weeks to live, then an adjusted 3-6 months to live after I responded to radiation, then another oncologist told me I would likely die around the one year mark. Yet, I passed that milestone in April 2025, and currently, I’m still doing quite well.

Lobular breast cancer is a very odd bird in the spectrum of breast cancers because it behaves differently from the more common ductal breast cancer. It is missing the enzyme e-cadherin, which causes cells to stick together, so lobular cancer cells are less likely to create solid tumors, making it much harder to detect in imaging scans. In the case of hormone-driven lobular cancer, a conventional Pet Ct, which looks at glucose uptake, is less likely to accurately view it because Lobular uptakes hormones more than sugar. This makes MRIs and the FES Pet CT better scans to detect lobular. But in my experience, even MRIs have never accurately visualized my cancer, and the FES Pet can’t be conducted if you are on hormone treatment. For all of these reasons, it is common for those with lobular cancer to be diagnosed at later and more advanced stages than other types of breast cancer, and to have more advanced cancer detailed in final pathology post-surgery.

Because of lobular cancer’s unique characteristics, my journey has been fraught with numerous misdiagnoses and dismissals of symptoms, leading to more dire outcomes each time I was finally diagnosed, which left me frustrated, anxious, and maddeningly hypervigilant. These experiences forced me to develop a deeply trusting relationship with myself, my body, and my intuition, and to become a very assertive self-advocate. I’ve endured difficult complications, surgical failures, and been given life-altering prognoses. I’ve fought and won my own psychological battles and continued living my life through all of these circumstances. I have outlived every prediction, and I have learned so much about myself, and of course, cancer, but also my body, my mind, and who I am. After 12 years of living with this disease, I am ready to start sharing my experience, to begin talking about what I’ve been through, and sharing how I’ve supported my body and my longevity. I hope this blog will offer you a place to feel like you are not alone and that someone else has been through this too and went on living. Even though we don’t know what causes cancer, and I don’t know how long I personally will be here, I want to prove that we can live longer and better by choosing to live more deliberately.

The following blogs will be an exercise in journaling for me, but I will also share all the things I did to help keep my body healthy, support my longevity, maintain my mental and emotional wellbeing, grieve the life I thought I would have, and accept the one I was given instead.

I wish you beauty, a long life, and of course PEACE.

- Stacy Withrow