Alexis Browning: Navigating Young Adulthood with a Cancer Diagnosis

Age: 28Louisville, Kentucky

In 2019, I noticed that my right leg was bigger than my left leg. Initially, I did not give much thought to it because it is my dominant leg and it just looked like a big thigh muscle. Eventually it became painful, prompting me to see a physician. I had an MRI, which showed that I had an 18-centimeter tumor wrapped around my right femur bone. Follow-up scans and biopsies revealed that the cancer had metastasized to my lungs, which led to my diagnosis of stage IV alveolar soft part sarcoma (ASPS). It was truly horrifying. I could not wrap my mind around what was happening. I did some research on the cancer and realized how rare the disease is and the devastatingly low survival rates.

Immediately after my diagnosis, I traveled to the Dana-Farber Cancer Institute in Boston to meet with a sarcoma specialist. It was an excruciating trip because it reminded me how severe my situation was. My oncologist told me that I had between 10 and 20 years left. He suggested a clinical trial at NIH that was evaluating an immune checkpoint inhibitor, atezolizumab, for ASPS. Before enrolling in the trial, I decided to freeze my eggs because it was always my dream to have a family and be a mother someday. I took the time to do that as quickly as possible.

After signing off on several really intimidating consent forms, and undergoing more scans and biopsies, I eventually joined the clinical trial. I stayed on the treatment for two and a half years. My cancer remained stable the entire time. However, I was living with consistent pain and decided to leave the trial to have my primary tumor surgically resected. The goal was to alleviate the pain and improve my quality of life. We did not have much hope for success because of the way the tumor wrapped around the bone. But when I woke up after my procedure, my surgeon told me that miraculously, he did achieve clear margins. There was no cancer in my leg any longer. The pain completely subsided. I had a restored quality of life.

Right after the surgery I went back on the same treatment, atezolizumab. However, I was no longer traveling to NIH but making day trips to the Ohio State University Cancer Center with my parents for my treatment. Thankfully, in December 2022, atezolizumab was approved by FDA for the treatment of ASPS. This meant that I could get treated locally in Louisville. Currently, I travel 15 minutes down the street to get my infusion. That is another massive victory that I have had the luxury of experiencing during my time battling ASPS. I feel fortunate to have been a witness to actual scientific progress and to be treated with the only approved option for ASPS.

I will continue to receive treatment every 21 days. My disease has remained stable even though I am still living with the remaining cancer in my lungs. While I remind myself that I get to live a mostly normal life and I am fortunate not to have disease progression or harsh side effects, it is hard sometimes. I feel like a financial and emotional burden to my family and the people that are closest to me. I have also learned that I will not be able to stop treatment long enough to carry out my own pregnancy. I have always dreamed of being a mother and this is weighing most on my soul right now.

I am fortunate to have an amazing village of supporters who love me, and I can feel that deep in my core. On days when I just do not have any grace to give, they help me find little moments of comfort and joy in the mundane and in the darkness. And I know that I could not do it without them. These are things that cannot be discounted.

During my time living with ASPS, I have made it my mission to use my voice to advocate for and bring attention to the cause. It gives me a purpose and shows me that I am not alone.