Emily’s Story
After initially being diagnosed with pneumonia, I was shocked to learn at age 39 that I had stage 4b NSCLC. I was diagnosed in February 2022.
We had a strong sense that, whatever caused my advanced lung cancer at a young age with no known risk factors, I needed to get to one of NC’s Comprehensive Cancer Centers. Once we met with Dr. Weiss at UNC, we felt intuitively that he was the right oncologist for us. But we also took advantage of Duke being down the road to get a second opinion, which I felt was important given that I had metastatic disease. It gave us additional peace of mind that both Dr. Weiss at UNC and Dr. Stinchcombe at Duke advised that we needed a full molecular biopsy, ie Next Generation Sequencing, to determine whether I had an actionable biomarker driving my cancer and would therefore benefit from a targeted therapy as first-line treatment.
I have found strength in leaning on my husband, family, and friends — and my three dogs. I have also found strength in connecting with other lung cancer survivors. I wasn’t sure at first if I wanted to join a support group – in my case, the RETpositive Facebook group – but I’m glad I did. Listening to and sharing with fellow survivors, especially the many RET NSCLC survivors in their 30s and 40s like me, has helped ground me. I wouldn’t choose the reason, but I’ve also made some very close friends I would never have otherwise met.
I’ve responded well to my targeted therapy (Retevmo) for 15 months and counting. It took about a year before I really felt like I got my bearings back. In addition to my personal support network, I see a UNC therapist (remotely) who works with cancer survivors and caregivers. Grief and feelings around cancer are multi-layered and ongoing, so having the space to talk with a professional – in addition to my loved ones – has been essential.
To someone newly diagnosed, I’d say:
– Everyone is a “number of 1.” Take heart from many others’ uplifting, long-term treatment responses. Everyone’s journey is unique and lung cancer care is improving at a rapid pace. My own treatment wasn’t FDA-approved until 2020. Don’t fixate on statistics; doing so will only make you spiral!
– Acknowledge your vulnerability, anger, and sadness, and share those feelings with people you trust. Grief is part of being human, and giving yourself space to grieve can help you grow in wisdom and deepen your ability to understand and empathize with others.
– This diagnosis isn’t something to run away from, but it doesn’t define you either. Continue nurturing those relationships and pursuits that really matter to you and are personally fulfilling. This is part of your life, but it is not WHO you are.