Novartis Know Now: Knowing Her BRAF Status was Jordan’s “First Ray of Hope”

Meet Jordan Ezekiel – a melanoma survivor who was able to benefit from early testing for the BRAF gene mutation. Learn more about Jordan’s incredible journey with melanoma and why it was important for her to Know Now and get tested for the BRAF gene mutation in her guest blog.

The day I learned I was BRAF positive was my first ray of hope that I experienced, and I carried the ray of hope with me until my last day of treatment.

On Thanksgiving Eve of 2017, I had a mole on my lower back biopsied. I could tell that it looked “different” and had become increasingly itchy over the past few weeks. I was 20 years old at the time, was very healthy, had moles since birth all over my body and even had this exact mole biopsied seven years prior with clean results. I went about the holiday season enjoying myself, as any young adult would without thinking much of the pending biopsy results. I headed back to college the following week ready to begin celebrating the Christmas season and prepare for finals as I was a junior in nursing school at Saint Anselm College in New Hampshire. I remember coming home from clinical one day to a phone call that changed my life. When my roommate walked into our shared room later that evening, the only words I could manage to say were “I have cancer.” I couldn’t fight back the tears.

I was confused, angry, anxious, scared, all mixed up into one feeling of being overwhelmed.  My dermatologist who biopsied the mole informed me that the entirety of the biopsy contained cells with a melanoma mutation, indicating that there was likely still more melanoma beyond the biopsy site and I would need to start seeing an oncologist to develop a treatment plan. Merry Christmas to me!  Following the phone call, things moved very quickly. I met with a brilliant oncologist the following week at Massachusetts General Hospital (MGH) in Boston, their top oncology dermatologist and my surgeon who would operate on my back in two weeks. He informed me that I needed to have more testing done to check and see if the cancer had spread to my lymph nodes, and if so, he would remove those too. A few days before the new year, I had a major surgery that left me with a 14-inch scar up the center of my back and had 18 lymph nodes removed from underneath my armpits. Now I would sit, rest and wait for the follow-up appointment where I could find out more about the melanoma prognosis.

Two weeks later in my oncologist office during a January blizzard, I received news I was not prepared for. The cancer had spread to my lymph nodes and I would likely need to start treatment. I kept a brave face during the entire appointment, and the second the door closed behind him I let out a sobbing cry unlike anything I knew was possible. Why me? I had never been to a tanning booth, I always wore sunscreen, neither of my parents had skin cancer and I was too young for this to be happening… so why me? It would take years for me to find the answer to this.

Weeks later after I had healed from my surgery enough to drive myself around, I met with my oncologist who informed me that my melanoma was being tested to see if it contained a BRAF mutation. She educated me that about 50% of young people with Stage 3 melanoma do have this mutation, and she gave me a wink and told me that she just had a good feeling about this one. I learned that if my melanoma did come back BRAF positive, I would be able to start taking an oral medicine for one year that would essentially inhibit any further BRAF growth within my body. However, if my melanoma were to be BRAF negative, my options were only future surgery and close observation. I went home and prayed for days that I would be positive. I believed it to be my best chance of having a normal life in my future.

Two weeks later, around 9 p.m. on a Friday night, my oncologist called me to tell me the good news. I was BRAF positive! Surrounded by my dearest friends, we celebrated the night away. We danced and hugged each other that I would be able to go through an oral therapy to save my life… the irony. As a young woman, I went through protective fertility surgery prior to beginning my treatment. Weeks later, I started my year-long oral therapy regimen that I thank God everyday I was able to receive. The course was long and oftentimes difficult, although I would not have it any other way in hindsight. Today I am over one year in remission and have had clean scans for over two years. I am happily engaged and work as an ICU nurse in New Hampshire.

I openly share my cancer experience often as I think it is so important to educate others on the emotions behind a cancer diagnosis, especially in young adults. In my early months after being diagnosed, I experienced graphic nightmares nightly of myself dying in different ways. I was terrified of this cancer and terrified of dying. The day I learned I was BRAF positive was my first ray of hope that I experienced, and I carried the ray of hope with me until my last day of treatment. I never second-guessed myself on whether or not to take the treatment, and I am so proud of myself for completing the whole course while remaining a college student. Maintaining a normal social life aided me tremendously in maintaining a positive outlook on life, despite having a cancer diagnosis.

Years later, I know the answer to the “why me?” question. I truthfully believe I would not be half the nurse I am today had I not been a cancer patient. I have grown in ways far beyond my years, and I feel grateful to have been faced with this life experience to grow through it. I have grown so much closer to my beloved family and friends who were my support system since the first phone call. I find it to be a blessing that I can share the patient experience with many of the vulnerable patients I serve daily. I would advise anyone facing a similar diagnosis to find their ray of hope, and clench onto it tight. It’s a long ride, but the other side is so well worth it.